Jim and I have now spent many hours on conference calls discussing Michael's eventual transition from treatment to residential. Most of the conversation is between his current team in Baltimore and his future team in St Louis.The discussion is primarily about his behavioral plan and how to translate that from one place to the next and about what procedures are appropriate for his new setting and within the boundaries of what the state of Missouri will allow.
One of the main procedures that has been defined, redefined, and re-redefined is a question of "discipline". In the hospital, Michael is taken to a "safe room" when he gets to a certain level of "not having control" over his behavior. Amazingly, when he is completely isolated in that room he usually calms right down. His current team sees that as putting him in a position of being able to calm down and preventing him from potentially getting hurt or hurting someone else.
He obviously does not like going into the safe room and resists it, but once he's there he becomes calm and comes out his sweet self again, having regained control and composure.
The question has been: Since he gets to a certain level of being "out of control" when you put him there, is that disciplining him? Or is it merely giving him what he needs to cope? One team calls it discipline and doesn't want to punish him for losing control, the other sees it as helping him when he has lost control and cannot regain it on his own.
One day, after a long phone call discussing discipline versus helping him regain control, I read:
"My child, don't make light of the Lord's discipline, and don't give up when he corrects you.
For the Lord disciplines those he loves, and he punishes each one he accepts as his child.
As you endure this divine discipline, remember that God is treating you as his own children.
No discipline is enjoyable while it is happening - it's painful! But afterward there will be a peaceful harvest of right living for those who are trained in this way."
Hebrews 12:5b-7a,11
I don't like the idea of God disciplining me....or anyone. Why can't he always choose grace and just "let it go"? But hearing this conversation around Michael's situation has helped me see "discipline" in a different way.
What if God knows that in certain situations extending grace instead of "discipline" would be harmful to me?
What if allowing me to continue with a behavior or down a road of disobedience would mean I end up seriously hurt or seriously hurting others?
What if discipline simply means putting me in the place where I can regain perspective and come out more my true self than when I went in....even if it's where I desperately did not want to go?
What if there are times when "discipline" is really "grace"?
I completely trust both teams discussing my son and making decisions concerning his treatment and "discipline" or how to help him.
I don't know if he does or not, but he should. They all want to help him and they all know better what will help him than he does.
Perhaps I need to trust God like that!
Tuesday, April 14, 2015
Sunday, March 22, 2015
A Dad's Perspective: Written by Jim Beise
Turn to me and be gracious to me,
as is your way with those who love your name.
Keep steady my steps according to your promise,
and let no iniquity get dominion over me.
Redeem me from man's oppression,
that I may keep your precepts.
Make your face shine upon your servant,
and teach me your statutes.
(Psalm 119:132-135 ESV)
"As is your way." This comes from a deep confidence in who God: Father, gentle king, suffering servant, ruler of all.
He turns to me, giving his attention.
His eyes on me, nothing about me or in me beyond his sight. Not the dark places, not the bright horizon.
He is gracious to me. Loving, kind, generous.
He keeps my feet steady.
The other day I was alone, praying, and found my emotions spilling out again. I found myself saying, to my self,
"I can do this. I can hold this together. I can do this. I can get through this pain."
What a strange way to talk to oneself.
Instead, there is a prayer that continues...
You, Lord, keep my feet steady. (I cannot do this)
You, Lord, do not let sin have power over me. (I cannot do this)
You, Lord, redeem me (I cannot hold this together)
You, Lord, make your face shine on me. (I cannot get thru this on my own)
You, Lord, teach me your statutes. (I am not smart enough to do this.)
You are beautiful, Lord, in your holiness and mercy, your graciousness and kindness.
as is your way with those who love your name.
Keep steady my steps according to your promise,
and let no iniquity get dominion over me.
Redeem me from man's oppression,
that I may keep your precepts.
Make your face shine upon your servant,
and teach me your statutes.
(Psalm 119:132-135 ESV)
"As is your way." This comes from a deep confidence in who God: Father, gentle king, suffering servant, ruler of all.
He turns to me, giving his attention.
His eyes on me, nothing about me or in me beyond his sight. Not the dark places, not the bright horizon.
He is gracious to me. Loving, kind, generous.
He keeps my feet steady.
The other day I was alone, praying, and found my emotions spilling out again. I found myself saying, to my self,
"I can do this. I can hold this together. I can do this. I can get through this pain."
What a strange way to talk to oneself.
Instead, there is a prayer that continues...
You, Lord, keep my feet steady. (I cannot do this)
You, Lord, do not let sin have power over me. (I cannot do this)
You, Lord, redeem me (I cannot hold this together)
You, Lord, make your face shine on me. (I cannot get thru this on my own)
You, Lord, teach me your statutes. (I am not smart enough to do this.)
You are beautiful, Lord, in your holiness and mercy, your graciousness and kindness.
Tuesday, March 17, 2015
Always On My Mind
As I strained to hear the voice on the conference call and frantically looked at the list of names to know who was talking, I couldn't help but think of my son sitting in his hospital room almost 900 miles away. He had no idea that there were 17 people in 7 different locations who had been on a call for over an hour discussing him.
It has been 6 months since Jim and I drove 14 hours to admit Michael to the Neuro-Behavioral unit at Kennedy Krieger Institute in Baltimore. Now we are preparing for his transition to St Louis to live in a residential facility with Easter Seals.
These conference calls happen weekly now and include 16 professionals in different locations, and us. The topics include: how to set up his new residence, what procedures to put in place to deal with his aggressive behavior, what staff to hire, how to train the staff, etc. Data is given, procedures and policies are often disagreed upon, discussion happens, agreements made. All the while, the subject of all conversation sits in his room in the hospital oblivious to the attention he is receiving over the air waves.
We visit Michael at least once every 3 to 4 weeks. Since he is non-verbal, it's impossible to know what he is thinking when we walk through the door. Does he wonder where we've been? Would he like to ask what took us so long? Is he just so happy to see us that none of that matters? Does he long to go home?
What he is not aware of is all that happened that led to us walking through that hospital room door. Normally it means we got up at 4 am, drove 2 hours to the airport, parked our car, took a shuttle, got checked in, went through security, took 2 flights that included a layover, waited for our luggage, took another shuttle to rent a car, and drove 30 minutes to the hospital. All he knows is that he looked up and saw us walk through the door.
We don't explain all we did to get to him, he wouldn't understand. We just wrap him in our arms, tell him we love him, kiss him, and settle in.
As I strained to hear the voice on the conference call last week, I couldn't help but think about Michael sitting in that room, unaware of all that goes into his care; all of the battles we have fought to get him the help and resources he needs, the sleepless nights when all we think about is him, the conversations, the paperwork, and our heavy hearts as we miss him and want better for him. He is always on our minds!
Later that day I thought about all of the times I ask the same questions of God that my son might be asking: What took you so long? Why haven't you worked this out? Do you even remember that I'm here?
I have no idea all that goes on and how he is at work for my good in ways that I cannot see or understand. I will never understand the depths of his love for me...or for my son. But I do know that nothing can separate it from me, and I am always on his mind!
I will find my peace and hope in that.
It has been 6 months since Jim and I drove 14 hours to admit Michael to the Neuro-Behavioral unit at Kennedy Krieger Institute in Baltimore. Now we are preparing for his transition to St Louis to live in a residential facility with Easter Seals.
These conference calls happen weekly now and include 16 professionals in different locations, and us. The topics include: how to set up his new residence, what procedures to put in place to deal with his aggressive behavior, what staff to hire, how to train the staff, etc. Data is given, procedures and policies are often disagreed upon, discussion happens, agreements made. All the while, the subject of all conversation sits in his room in the hospital oblivious to the attention he is receiving over the air waves.
We visit Michael at least once every 3 to 4 weeks. Since he is non-verbal, it's impossible to know what he is thinking when we walk through the door. Does he wonder where we've been? Would he like to ask what took us so long? Is he just so happy to see us that none of that matters? Does he long to go home?
What he is not aware of is all that happened that led to us walking through that hospital room door. Normally it means we got up at 4 am, drove 2 hours to the airport, parked our car, took a shuttle, got checked in, went through security, took 2 flights that included a layover, waited for our luggage, took another shuttle to rent a car, and drove 30 minutes to the hospital. All he knows is that he looked up and saw us walk through the door.
We don't explain all we did to get to him, he wouldn't understand. We just wrap him in our arms, tell him we love him, kiss him, and settle in.
As I strained to hear the voice on the conference call last week, I couldn't help but think about Michael sitting in that room, unaware of all that goes into his care; all of the battles we have fought to get him the help and resources he needs, the sleepless nights when all we think about is him, the conversations, the paperwork, and our heavy hearts as we miss him and want better for him. He is always on our minds!
Later that day I thought about all of the times I ask the same questions of God that my son might be asking: What took you so long? Why haven't you worked this out? Do you even remember that I'm here?
I have no idea all that goes on and how he is at work for my good in ways that I cannot see or understand. I will never understand the depths of his love for me...or for my son. But I do know that nothing can separate it from me, and I am always on his mind!
I will find my peace and hope in that.
Wednesday, February 18, 2015
Lent
I
grew up in a church that observed Lent, but didn't teach much about it (in all fairness..
maybe they did and I wasn't paying attention...that's possible!). We
seemed to talk more about caffeine headaches
and how much we missed chocolate than about 40 days to intentionally set
things aside to focus on intimacy with Christ and to draw near to him!
I
honestly thought that "giving something up for Lent" was the whole
goal. No one ever told me that you give something
up as a fast to physically show your hunger and longing for God.
I
also didn't understand that this is something we do in secret. (See
Matthew 6) The attention we get from talking about our caffeine headache
is the only reward we will get if giving
up coffee is the goal. However if our goal is to draw near to God, then
"your Father, who sees everything, will reward you." (Matt 6:18). I say
let's shoot for THAT reward!
In recent years I've also come to see the importance in asking God's guidance in what I should do
during these 40 days of Lent that will draw me closer to Him. Often
what I think I should give up is
different than what I really NEED to give up. He may have something in
mind that is way different than what I had planned. He knows us better
than we even know ourselves.
I
pray that during these 40 days you will feel the love and the wooing of
a Savior who adores you and longs to pour that love on you.
Angela
http://www.upperroom.org/lent101
http://www.focus.org/blog/posts/what-should-i-do-for-lent-pope-francis-ten-tips.html
Saturday, December 20, 2014
The Writer of the Story
"Maybe you don't want to change the story, because you don't know what a different ending holds. There's a reason I am not writing the story and God is.
He knows how it all works out, where it all leads, what it all means.
I don't." Ann Voskamp from A Thousand Gifts
If I had been writing the story 20 years ago today, our Michael would have been born with a perfect set of chromosomes, no deformities, no condition that would lead to autism and a mood disorder. I have begged God to write the story differently. I have imagined what life would be like if I had been writing. I assume that my writing would lead to a better ending.
But I did not and am not writing the story, and I do not know what the a different ending would look like. Today we take comfort in the Writer who knows how it works out, where it leads and what it all means. We find joy in watching our boy dance. Oh how he loves to dance! We are amazed at the impact a silent one can have. We hurt when he hurts. We so wish for more for him. We laugh and cry. We recognize that each of our stories are better because of his.
We look forward to the day when all will be clear, and we will see the pieces of the story that are hidden from us now.
We place all of our hope in the One who writes perfect eternal stories.
And we are grateful!
He knows how it all works out, where it all leads, what it all means.
I don't." Ann Voskamp from A Thousand Gifts
If I had been writing the story 20 years ago today, our Michael would have been born with a perfect set of chromosomes, no deformities, no condition that would lead to autism and a mood disorder. I have begged God to write the story differently. I have imagined what life would be like if I had been writing. I assume that my writing would lead to a better ending.
But I did not and am not writing the story, and I do not know what the a different ending would look like. Today we take comfort in the Writer who knows how it works out, where it leads and what it all means. We find joy in watching our boy dance. Oh how he loves to dance! We are amazed at the impact a silent one can have. We hurt when he hurts. We so wish for more for him. We laugh and cry. We recognize that each of our stories are better because of his.
We look forward to the day when all will be clear, and we will see the pieces of the story that are hidden from us now.
We place all of our hope in the One who writes perfect eternal stories.
And we are grateful!
Thursday, May 8, 2014
Amazing Grace
When my children were each 5 years old I had them memorize Psalm 103. I wanted God's character branded on their little hearts, and their default setting to be: "God is good, compassionate, gracious, slow to anger, abounding in love, He does not treat me as I deserve to be treated because of my great sin, He knows that I am made of dust...." Since then, many times in my prays I have gone back to that Psalm and been overwhelmed with gratitude that He truly does not treat me the way I deserve to be treated because of my sin. I am so aware of and humbled by His grace.
Recently I was praying and thanking Him for that and felt that He whispered to my heart, "Do you extend the same grace?" I had to ponder that and allow Him to show me the ways that I do NOT extent that same grace to those around me, often those I dearly love.
When I see someone not doing what I know they should do, not living as they should live, choosing sin, and heaven forbid not doing what I've told them to do.....always for their own good of course.....my tendency is not to extend grace. My tendency is to at least withdraw my affection and approval for a while. After all, how will they come around and do right if I just keep loving them and walking close beside them?
The truth is that God hasn't called me to fix people or to make sure they live right. He has called me to speak truth and to love. Only HE can change and heal a heart, only HE can call a person's soul to Himself. I've had a lot of repenting and changing to do. I happen to like helping the Holy Spirit out!
To love is always the right thing to do. I'm asking the Holy Spirit to point out to me any time I am not extending the grace that has been extended to me in such a loving way. I'm learning to walk with people on their journey and not dictate the steps, I'm learning to love even when they are wrong....not condone or approve, but always to love and never to withdraw my affection.
I pray that you are aware of God's character and unconditional love for you, regardless of your sin and missed steps. I'm sorry if you have been treated the way you you deserved to be because you sin.
I pray that a lost and hopeless world will be amazed as they see the same grace we've received in those of us who represent Him!
To love is always the right thing to do! What amazing grace!
Recently I was praying and thanking Him for that and felt that He whispered to my heart, "Do you extend the same grace?" I had to ponder that and allow Him to show me the ways that I do NOT extent that same grace to those around me, often those I dearly love.
When I see someone not doing what I know they should do, not living as they should live, choosing sin, and heaven forbid not doing what I've told them to do.....always for their own good of course.....my tendency is not to extend grace. My tendency is to at least withdraw my affection and approval for a while. After all, how will they come around and do right if I just keep loving them and walking close beside them?
The truth is that God hasn't called me to fix people or to make sure they live right. He has called me to speak truth and to love. Only HE can change and heal a heart, only HE can call a person's soul to Himself. I've had a lot of repenting and changing to do. I happen to like helping the Holy Spirit out!
To love is always the right thing to do. I'm asking the Holy Spirit to point out to me any time I am not extending the grace that has been extended to me in such a loving way. I'm learning to walk with people on their journey and not dictate the steps, I'm learning to love even when they are wrong....not condone or approve, but always to love and never to withdraw my affection.
I pray that you are aware of God's character and unconditional love for you, regardless of your sin and missed steps. I'm sorry if you have been treated the way you you deserved to be because you sin.
I pray that a lost and hopeless world will be amazed as they see the same grace we've received in those of us who represent Him!
To love is always the right thing to do! What amazing grace!
Saturday, April 19, 2014
Easter
Today is Easter…a reminder that there is hope in all that is not as is should be…there is resurrection after death….all things will be redeemed...and one day all brokenness will be healed.
This Easter is timely for me. We’ve had a year of watching Michael in severe pain and not known where it was coming from or what to do about it. We’ve been in and out of hospitals. We’ve watched him try to fit in at schools, on outdoor basketball courts and soccer fields where children are playing, all to no avail. We make life decisions for him without the benefit of hearing what HE wants or what HE would prefer. We see people judge him when his behavior is out of control and not see the sweet guy behind the behavior. This hope of life beyond what we see now is like water to my parched soul.
When Michael was a baby I watched an interview with a mom who had a child with special needs. Her main statement was “Love is not enough”. Her point was that you have to fight for your child, you have to seek out answers, you have to push and insist that they get what they need, you have to demand a yes when all you hear is no. “Love is not enough”. That has rung in my heart for 19 years and has kept me awake many nights wondering if what I was doing for him was enough…certain that it wasn’t.
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