Thursday, August 18, 2005

survey says......


We got the thumbs up from the ABA team for opting out of preschool for now.
I have been praising God all afternoon. More in weepy gratitude than dancing joy, but I know that will come. It will definitely come.
OMgosh. I can't even describe it.
When I told Jimmy he said that as he thought about the possibility more and more he felt ever encouraged that this would be the right thing, God's will for us all at this time. Once I told him the good news he said, "Oh Susan. A weight I did not even realize I was carrying has just been lifted off my shoulders." I could hear and feel the emotion in his voice.
Ya'll, this will be so good.
For months I have been struggling with a fatigue like I have never known. Soul weary. I started out telling myself to, "Buck up!" Then when I couldn't I started looking around and figured that Jimmy needed to get with it (and he did need to), but that didn't help much either. Then I figured it was "this, that, or the other thing," with the girls. Finally, by his grace, and the many prayers of those who love us, it was one question uttered during a lunch date with a friend that opened my eyes. What needed to change was what I was doing. Not because what I had been doing was wrong, but it was no longer necessary. I am so narrow in my vision, I don't know if I could have seen that there were possibilities, alternatives on my own.
Praise the Lord, that he does not lose his faith in me like I so quickly can in him. Interestingly, and I hope I can learn something from this aspect of the trial, is that while I am pretty certain the timeline for my closing shop would have been the same, the burden could have been lifted much sooner if I would have been willing to let it go. Man alive am I ever what Oswald Chambers refers to as an "unintelligent wadge that refuses to be enlightened." Or even more piercing is this:
"Never disregard a conviction that the Holy Spirit brings to you. If it is important enough for the Spirit of God to bring it to your mind, it is the very thing He is detecting in you. You were looking for some big thing to give up, while God is telling you of some tiny thing that must go. But behind that tiny thing lies the central citadel of obstinacy, and you say, "I will not give up my right to myself," the very thing that God intends you to give up if ever you are to be a disciple of Jesus Christ." *

So, PTL and a weary and humble thank you to all of my prayer warriors.
We may not be Ozzie and Harriet, but the next semester we'll at least get to figure out our family's version of it.
I can't wait!

*For the full text click here:

Wednesday, August 17, 2005

so i am turning over a big decision.........

It is ultimately in God's hands, though I sure could use some dedicated prayer on the matter.
Some of you may remember my post back in like Feb or so about being so TIRED. Just tired. It has been hardcore for us since January 04. I have been preparing and delivering and billing, etc. 115-120 meals a week, driving almost 3000 miles every 5-6 weeks, learning as much as I can about what is up with my girls, getting schooled on how to parent them, dealing with my grief, dh's grief (which until about 5 weeks ago looked a whole lot like anger/meanness which I took personally (of course! It's all about me right?), anyway, you get my drift. Yes, we have been blessed beyond measure and we are grateful beyond measure too. But brothers and sisters, I am TIRED and I simply cannot keep up the pace any longer. I started losing steam around the holidays, Abby's release from BI, their birthdays. Making a decision about what to do for Beans was very hard. Well the decision wasn't that bad, but realizing that one needed to be made was. I struggled through Jimmy's departure post Christmas to Aspen, but prevailed. But when he left again for V-day, upon his return I just broke down. I have never regained my momentum since. I cannot manage to get the most basic tasks accomplished. Things that require little more than my signature and a stamp or to be faxed, go undone. I can't remember anything, ANYTHING! And I am weary. I wake up every morning and immediately know I am already two hours behind for all that needs to get done. I can't get up any earlier. I can't stay up any later. A girl, even me, needs at least 3-4 hours of shut-eye a night. I long to spend time with my girls, but can't ever devote my full attention. My marriage needs to be nurtured. My spiritual life needs to be tended. I need to be tended.
I went to lunch with my friend yesterday, that in itself a novel concept, and we got to talking and it turns out that we are in the same place, with near identical struggles. Only the circumstances surrounding our woes are different. Well we had a great conversation. It was deep and very clarifying for me. I had been talking about what we hoped to achieve for the girls (a crash social skills course for kindergarten '06), a possible job change for Jimmy (please!), sell the house, move to the 'burbs, etc. . She asked me, "What do you, SUSAN, want in the next year?"
Without skipping a beat I said, "I want to stop with all the food. I want to take care of my family. I want to go a whole day without driving anywhere. I want to fold towels and read stories and snuggle. I want to eat at the table as a family. I want to be a wife. I want to be a mom." The tears were rolling down my face by the end. Not noisy sobby stuff, just my heart crying and the tears spilling over, KWIM?
But, I reasoned. It just wasn't possible. Financially, we need my income if we are to keep the girls in speech and have them at the preschool. So, I told her (and myself) it is just one more year. I just need to hold on until kindergarten...then, I'd get a break. We'd make it.
After lunch I picked Beans up and we headed over to the house where Abby was spending the day. The little boy is also on the spectrum (VERY mild) and his SLP/ABA therapist was at the house and she was working with him and Abby. Emma Jean asked to join and she was cool with that. She knows my girls, but had not seen them in months. She was blown away by their progress, language wise. She told me a lot of interesting things with a different perspective. I just kind of filed it away to chew on later. And we headed home.
Day turns into night, then night into day.
Jimmy and I had a long conversation this morning and I confessed my real exhaustion. I also confessed that my back had kept me from my clients for a week and it was the best week I've had in so long. It was such a pleasure to spend time with the girls, to keep up with my house, the bills. To wake up unoppressed by my "to do" list. As we talked, and agreed to pray on what needed to happen next, thoughts started coming together for me. And now here is what I need the prayer about:
When Emma Jean is released from ABA (hopefully by the New Year), if we did not enroll the girls in school, I could quit cooking. On Jimmy's current wage we could afford speech and a physical activity for each girl. I think I have the tools to design a little curriculum to keep us busy. I am pretty confident I can network with enough families who would be willing to set up weekly, purposeful playdates for social skills enrichment. We could even still afford a few social skills classes for the girls between now and fall '06. And that would be that. It has been such a relief to even consider that there is an alternative! There really wasn't before. We had to do what we've done. But I had resigned myself to more of the same and I was feeling pretty beaten down. What if this would work?
I have calls in and emails out to all the various professionals who work with the girls. If they do not think that the girls would lose ground or their future be compromised by us opting out of preschool, at least for now, then the desire of my heart is to opt out and "home school," of sorts.
I am looking forward to talking to Jimmy about this tonight and hearing back from the "calvary" (all the professionals we have in our minions...). I have already begun to put it before the Lord, but in a haphazard way. I will be on my knees tonight for sure. Would ya'll please help? I am asking for clear direction and for my faith to be enough to trust that He has the girls' well in his hands, and me. And our whole family.
Thanks ya'll.

Saturday, August 06, 2005

because my God rocks like that....

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love."
~Washington Irving

It has been a wild trip.I am so grateful to God for (seemingly) not answering the prayers I've made for most of my life, and then for answering the prayers I began a little over a year ago.I guess I will be forced once again to admit that He just might know what he is doing.
It was July '04 that I first prayed, "Lord, LORD!???!? Please help me to be a better parent to Emma Jean. I am so frustrated, scared and grieved..."
He took his time (at least by the"World According to Susan" standards). And when He answered my fervent prayers, it was in a way I certainly never expected.
When those first whispers of "Asperger's Syndrome" began whirling around Emma Jean...I never expected....ummm..I just didn't expect any of what followed. And even as I learned about AS, I didn't see it. I would call my mom who would patiently hear out my list of facts that I had learned that day, and she would reply,
"Oh, well you used to do that...""I wanted to get you tested for hyperactivity." (this was pre-ADHD).
"Susan,don't you remember how I would sometimes just lock myself in my room and you would harrangue me from the other side of the door? Just arguing?"
"You didn't stop screaming until you could speak, and once you did talk, you didn't have a first word, you had a first sentence and it was an arguement.?"
Hmmmm....Emma Jean much?
Despite the plain spokeness of my mother, I still didn't realize I was learning about me. Or that underneath my prayer pleading for insight in how to parent Emma Jean, I was pleading for insight into myself. And when the initial reality of all this set in and the ramifications of what was being revealed....I was so confused. Not so much by the self-revelation, but by what I was supposed to do with it. Because while there was a weird sense of relief to be found in this new knowlege there was also a sadness I had not anticipated...a deep sadness that can only be described as grief. Within this new grief and on top of the same old grief and frustration that I kept unwillingly revisiting in regards to Abby & Emma Jean ("enough already!" I regularly told myself). I was feeling so lost. Mentally, physically, and spiritually. Then suddenlyI caught a glimpse of Him. And in that finite and limited glimpse of His perfection, I learned that above all else and despite all worldly logic, I was blessed and his timing is really always perfect. I am stunned by how he blesses me!
I have been in a lonely, hard, and uncomfortable place for awhile now. Annoyed with myself and with God (can you believe my insolence?!) and by the stagnant place I seemed to be mired in. Finally it hit me the other day...Truly I am blessed by this "desert." Wanna know why I think this?
I may be totally wrong and off base spiritually. I hope someone will speak up if that is the case. But something came to me, just after prayer:
The relentlessness of the "grief" I struggle with as a parent of young children with substantial developmental delays that I have felt plagued by is not misplaced.
It does not signify a weakness on my part. My inability to stay in "acceptance" is not a sign of my personal lack of faith. Or that the periods of what I had thought were acceptance, were not actually, really acceptance. They were, but no one ever said that "acceptance" was a once and for all deal. My struggle is not uniquely mine. It is a real and difficult, recurrent state of being. In fact, I learned recently that there is actually a clinical name for it..."Chronic Sorrow" It is described so well here:
"Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability. This pervasive reaction is often not recognized or understood by those around the parents--professionals, family and friends. These feelings of chronic sorrow are normal and to be expected and accepted, given the life-long implications for the family and child. Many factors can affect the intensity and exhibition of chronic sorrow: the parent's personalities, the severity of the disability, the nature of the disability and the adequacy of support and services provided. Chronic sorrow does not mean that the parents don't love or feel pride in their child. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parent's lives. They co-exist; they do not blend into one color, or feeling. Because ours is such a "can do" society, there is pressure on parents to quickly put their feelings of sadness away or deny them. Parents are told to "think positively" and "to get on with your lives." They are told that God has "selected" them to receive this special child because they are such strong people. These kinds of comments, while well meant, deny the validity or parental long-term grieving. The discomfort of observing pain in those we care about can be part of the reason for such comments from others. Grieving, however, is a process that takes time, often years. It's a prickly bush that one must go through, not jump over. However, there are ways to support the process of grieving. Most parents frond support in a community of people who understand because they, too have lived the experience. It is lonely to be the only family on the block with a child with a disability. Being part of a support group or organization helps to combat feelings of isolation. Engaging in personal activities that do not center on the family member with a disability can help increase feelings of competency and self-worth. Counseling, especially at times of significant stressful milestones, can be useful. Chronic sorrow becomes a permanent part of the personality structure of most parents who have a child with a disability. It's a normal response. Its thread narrows and widens depending on life situations; most often it is accepted with courage. And, although permanent, it is not the dominant force in interactions with our children. The dominant forces are love and feelings of connectedness to them."
At first I was put off by the term "Chronic Sorrow." I resented the implication that I go around ever-vaclempt. But as I turned over the information on the subject in my mind, I realized how accurate a description it actually is. Then I immediately began to question God, " this description seems to make sense. I think I feel like this a lot. Now why would you go and let me keep feeling all this pain? Huh? Especially after everything else? I have been confused for months about how to get through all this and still live in your joy and walk in all your blessings. So?....What is it? Please reveal your purpose in this Lord, because I am not sure I can bear another "grief cycle" and still come out the other side. If you love me like you say you do, why do you keep making me go through this process?"
An answer to my self-indulgent tirade to God came to me while I was driving around delivering meals, making my rounds...
This "chronic sorrow" is actually a gift. A gift that only One who loves in absolute perfection could create from something so difficult and painful. Here's what I figure..Given that I am a recovering self-reliance addict, and still so prone to falling back on my short-lived and misplaced self-assurance, if He never let me feel the pains and pangs of this "sorrowing," guess where I'd be?
In charge. In control. With no one to depend on but me. Fallible me. Almost without fail, terribly unwise ME!
Thank GOD he loves me (and even better still....the girls) too much to let me lose sight of the Father from whom all blessings flow. See if I just got into "acceptance" mode and carried on, I know it wouldn't take too long before I'd stop claiming the victories for the Lord and dwell on the so called "losses" for me. Then I'd let myself get good and miserable and pretty soon I'd be of no use to anyone. But my God loves me and mine too much for that. He allows the pain, fear and whatever else pops up to happen because He knows that by doing so, He keeps me close to Him. Because He knows that without a reminder, I quickly forget how much I need him.
How cool is that? I mean it smarts fiercely while walking through it, but wow in the big picture!
Maybe these ramblings won't make sense to anyone else. All I know is that when these thoughts came to me, that even while it hurts, He still loves me and He lets me hurt because He loves me just that much...I just feel humbled and thankful by the truth that He will do or allow whatever it takes to draw me closer to him. And as long as I am seeking HIM, I will find HIM. Maybe not like I thought I would, or how I think I should, but so far, I have always found Him.
Job 37:22-24
"Out of the north he comes in golden splendor; God comes in awesome majesty. The Almighty is beyond our reach and exalted in power; in his justice and great righteousness, he does not oppress. Therefore, men revere him, for does he not have regard for all the wise in heart?"

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."
1Thessalonians 5:16-18 (NIV)
  • International Day of Prayer for Autism & Asperger's Syndrome