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On Ebbing (and Flowing)

March 31, 2012 By Leave a Comment

This week, life is both ebbing and flowing.

I am determined to respond better to my circumstances.  I have put some restrictions in place on my eating, which had gotten out of control with all of my business travel and stress of life.  I am waking early to pray and I am inviting others into my life to actively pray with me.  I have started taking walks in this beautiful weather we’ve been having.

I suppose this is the “flow” portion of my life.  On the “ebbing…”

Things with Ben’s health took a turn for the worse this weekend.  I was in DC for a 5 day conference.  My father took my children and Ben was home alone.  This is the first time we’ve tried this arrangement during my travels.  During the weekend, Ben played two concerts with the Maryland Symphony — work that he absolutely loves and is so thankful to be able to do.  He also experienced at least 9 seizures, if not more.

So life ebbs and flows.  After speaking with Ben and realizing how quickly his health had deteriorated, I was aware of how desperately I wanted to turn to food.  I didn’t.  First I tried to focus on work.  Then I tried to turn to God.  Finally, at night as I lay down to sleep, the tears came fast and quick and unbidden.  I didn’t want to weep.  But the release of tears frees me to pray more.

Another challenging issue facing me is that I need to make new arrangements for my children for after-school.  Ben needs to sleep in the afternoons, and I don’t like my kids coming home to an “empty” house.   One of my children is failing math because  Mom hasn’t been with him after school to supervise homework.  This is a bright child who is always responsible; but his lack of understanding has snowballed each week and he hasn’t wanted anyone to know how lost he is feeling in class so he hasn’t asked for help.  Now I need to find a tutor who can help get him back on grade level.

Ebb and flow.

How thankful I am for Hebrews 6:19, We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain.

Ebb and flow.  But not for our God.

Jesus Christ is the same yesterday and today and forever.

 

~Nancy

Filed Under: Epilepsy, Parenting, Prayer, Self Care Tagged With: , , ,

ADD, OCD and LD oh my!

March 30, 2012 By Leave a Comment

Do I view the glass as half empty or half full? It would be easy to ask the Lord why He has put so much on my plate but most times I consider it a compliment that He has entrusted me with so much. I believe it really helps to have this perspective both for my sanity and the peace to be an effective parent.

Jocelyn was removed from our drug plan because she is over 21. She decided that her ADD meds were too expensive to take on a daily basis and the “fun” began right away. It is so easy to forget how much the meds work. There were distractions everywhere and she was unable to focus on even the simplest task. Her meds suppress her appetite so she basically mowed her way through the fridge and cupboards. It is a good thing that she is thin. We saw a homeopathic medicine for lack of concentration that was on clearance so she tried that and I was surprised that it did help although it was not the same as her prescribed med. When she was first diagnosed I resisted meds until she hit puberty and then it was obvious that she needed them. She starts a new drug plan April 1 and then it will be back to daily meds again and it will be a day of celebration for sure.

Luckily her OCD meds are not as expensive so she stayed on those. I remember when we were looking for clothes for her I would ask her why an article of clothing was not acceptable when it fit so good and looked good on her. She would describe in detail how it bothered her and I quickly worked out a shopping compromise. I would not ask her why it did not work and she would simply supply a yes or no answer. It made shopping a lot less painful and I learned to accept her choices (within decency limits). It started to actually make sense once she was formally diagnosed with OCD.

My 10 year old daughter with LD is making great progress in school. She has a male teacher this year and I really think that it makes a difference in her school work. She seems to be taking responsibility for her work more than ever before and she has decided that she likes to read which is a big help. She is learning the benefits of cursive writing and it is making it easier for her to do her own work and rely less of others to scribe for her. Bottom line is a lot less stress on me and improved grades for her.

“Lord thank you for trusting me with these children and all the challenges that we face as a family. Continue to give me your perspective and wisdom to be the mother that you designed me to be. Help me to see them through your eyes and love them with the love that you channel through me.”

~ Twyla

Filed Under: ADHD, grace, learning disabilities, Medication, OCD, Parenting Tagged With: , ,

Can’t Let Go

March 29, 2012 By 3 Comments

Noah is hunched in the corner again, bent over a little blue rectangle like a penitent monk. What was a generous gift from his Grannie – a Nintendo 3DS – has become, as per usual, a source of obsession for our son. This is an area in which Aspies truly excel: when they take hold of an object (or person, or idea), getting them to let go is like trying to Jell-O wrestle a cat. The pursuit of specific and narrow areas of interest is one of the most striking features of Asperger’s Syndrome. Obsessive-Compulsive Disorder is analogous, and characterized by a pervasive preoccupation with perfectionism, orderliness, and control. The one is a differential diagnosis for the other. But they are distinguishable enough that when your son carries both, every day is ripe with opportunities to go to battle with a very determined spirit.

And I HATE to fight.

We are into day four of Noah’s new gift. It’s already to the point where I dread asking him to get dressed, eat a meal, do his homework, or take a shower because each directive elicits a scream.   Not a begrudging moan, or a reluctant surrender, but a sobbing howl because he cannot let it go. “MOM! I’m almost at the next level!!” (flinging self on floor). “I CAN’T STOP NOW!” (kicking the wall). “Noah, you have to put it down to do (X). You can pick it up again after you’ve done (X).” “I HATE (X)!” (stomping away) “HATE IT!” (screaming).   By this point, my ears are usually bleeding.

Because fear is the most prevalent emotion of autism, I have to tease out the anxiety from within the fixation. So many sources of original joy in Noah’s life have crossed the line into obsessive preoccupation but their roots are almost always found in fear.  I can’t imagine where he gets this.

Oh wait.  Yes I can.  My husband was kind enough to point out to me that lately, I’ve taken a love of my own to a whole n’otha level – surfing the internet for information, talking about it incessantly, laying awake at night ruminating on it. This wasn’t a gentle admonition, either.   He came right out and called me obsessed.   So I plumbed my own psyche for the obsession’s cause, and discovered that I’m afraid I will never get it. Ever. Because I’ve wanted it five times longer than Noah’s been alive. And when you’ve waited that long, well, it’s hard not to think the universe is playing a cruel joke on you.

Just yesterday, this verse appeared on my phone through my “Daily Bible” app: “The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace.” (Romans 8:6) When you’re both struggling with questions of mental peace AND searching for what to write about, and out of 31,100 verses in the Bible, this particular one shows up on your phone, it’s hard not to feel the hem of His cloak as the Lord passes by.

My desires – Noah’s desires – are fleshly. Which is not to say “un-Godly.” I’m certain God puts good things in our lives we continue to want, and then provides them for us. But when those good things become “every waking minute” things, the spirit has been given over to the flesh. It may not be easy telling Noah to take a break.   But I suppose that puts me in the role of chief exposure officer.   Kind of like the way arachnaphobes are treated by being thrown into a room full of spiders.  Lord knows it’s uncomfortable. But Lord knows it’s necessary.   I want peace.   I know Noah does, too.

- Sarah

Filed Under: Anxiety, Asperger, Attachment, Family, Uncategorized Tagged With: , ,

A Spring Prayer

March 28, 2012 By Leave a Comment

My girl and I love nature. We love windy days and surprises from God. Although the pollen count can cut short our spring enjoyment, we sneak in our moments. And they are glorious moments.

God gives us amazing hands-on close-up observances of new creations. In each instance, He lovingly reminds us of His good intent, of His boundless love, of His plan for rejuvenation, restoration, new birth.

For all of us in this Chosen Families community, I pray that God, whose name is Yahweh, the One True God, will open the eyes of our hearts so that we’ll understand all of His love for us, how much He wants to live in us and through us here on earth. I pray that the Holy Spirit will speak the truth to our spirits so that we’ll understand the hope He calls us to. I pray that we will feel Jesus hugging us tightly, that we’ll know He is with us and will never leave us.

I pray that our winter days, our dark times, will be just like the chrysalis a caterpillar spins. In the dark of that chrysalis, the caterpillar changes from a squirmy crawl-on-the-ground creepy thing to a beautiful butterfly which floats and flies on the breeze. I pray that we, too, will live like the new creatures we are—Jesus-people who are new and whole and free.

~ Cassandra

Filed Under: Change, Hope, Prayer Tagged With: , ,

All Shook Up

March 27, 2012 By 4 Comments

I got myself all worked up over nothing today. My mother and I went to the grocery store. She checked out in a regular check-out lane while I opted to do self-service (I think it is a throwback to when I was a kid and always wanted to be a checkout clerk in the grocery store). As we got in the car my mom told me that the cashier didn’t accept one of her coupons because it wasn’t for the right product. Well, I KNEW it was for the product she bought because I distinctly remembered the discussion my mother and I had as we checked which products would be covered by the coupon. So, I told my mom that I would take the cookies, the coupon, and her receipt back to the store and get the money for the coupon for her.

On my way to the store I rehearsed in my mind what I would say. I considered any argument that might be leveled against me. I tried to keep myself as calm as possible, but I could feel that old familiar feeling. It happens all the time when I have to right a perceived social injustice. My adrenaline kicks in, my heart rate goes up, my hands start trembling, and, I’m ashamed to admit, I go on the defensive. I anticipate conflict. Most of the time there is no real reason for it, but it still happens.

Today was no different. The customer service representative was as nice as she could have been. My hands were shaking as I took the money from her hand. We spoke kindly to each other. No one raised their voices. No one got irritated. It was a pleasant exchange and there was no reason for me to have such a physical reaction.

This makes me think of Stephen (AS) because I know he deals with anger and anxiety. As Stephen and I go through life and face situations where we have to confront people about things that we have questions about, how can we both learn to calm ourselves so that we do not experience those physical reactions that put us on edge? The responses that are part of fight or flight have no place in our everyday interactions with people. I suppose a book like Proverbs is rich with advice for situations such as these…here are a few of my favorite verses on the subject.

A gentle answer turns away anger, but a harsh word stirs up wrath. Proverbs 15:1

A hot-tempered man stirs up conflict, but a man slow to anger calms strife. Proverbs 15:18

Patience is better than power, and controlling one’s temper,

than capturing a city. Proverbs 16:32

 

Filed Under: Anxiety, Asperger, Bible Tagged With: ,

Out of the mouths of babes

March 26, 2012 By 1 Comment

17 year-olds with autism are “babes” in many ways, and these 2 conversations with my babe delighted me this week.

LAUNDRY BATTLE WON
Dan: When are we leaving for Spring Break?
Me: Saturday.
Dan: What time?
Me: Early, 6 AM.
Dan: That means I will have to do my laundry on Friday then.
Me: YES!

This next conversation is all the more remarkable since Dan does not have Asperger’s. I immediately ran to get paper and pen to write down this exchange.

Dan: Parsley is our alpha cat, and Sage is the omega cat (smiling at his own witicism).
Me: Do you even know what “alpha” and “omega” mean?
Dan: They’re the first and last letters of the Greek alphabet.
Me: That’s right! I didn’t know you knew that! You must be learning something from all the Jeopardy! you watch.
Dan: It was the first clue of the second season of the 1992-93 year.
Me: REALLY? How much was the clue worth?
Dan: Back then it was only $100. In the Bible category.

WOW.

~Danz proud mom, Peggy

Filed Under: Autism Tagged With:

Preaching the Gospel by “Doing Nothing”

March 25, 2012 By Leave a Comment

Famed Welsh medical doctor and minister Martin Lloyd-Jones tells the story of his mother’s reaction to his first sermon. When Martin asked his mother for her impressions of his oratory, his mother looked lovingly at him and said, “My dear son, you missed several wonderful opportunities to sit down.”

Lloyd-Jones’ propensity for the excessive use of words reminds me of my interactions with Fletcher. Since my little man is non-verbal, I will tend to supply his words for him. “We” have wonderful conversations on most days. However, there are some mornings that he lets me know, albeit not as kindly as Mrs. Lloyd-Jones, that I have missed several opportunities to close my mouth.

On one recent school morning, Brenda was having a time getting Fletcher ready. He had not slept well the previous evening and he was whining, crying, and screaming as she tried to get him dressed. It was so loud that it shook the walls in our home and moved me to leave the sanctuary of my devotional time to investigate the cause of the uproar.

As I entered the room, Brenda gave me that look that said, “If you love me, and you don’t want me to kill you, you will do something with this little demon!” Then she did the most unsettling thing – she had the audacity to leave the room! I thought, “Uh oh, what am I going to do now?”

With my mind racing, I sat on the couch beside my little troublemaker. As I sat there, I tried to think about what I could do that would settle him down. To be honest, it was difficult to concentrate with him screaming, but I just sat there beside him, deep in thought about how to help.

Then the most extraordinary thing happened. Fletch moved closer to me and started gently rubbing my arm. This surprised me; I then thought, “Hey, if this will shut him up, I’ll keep doing nothing.” It was astounding. As I sat there “doing nothing,” he settled down, and a few minutes later his mother returned and easily prepared him for school.

Of course, she was astonished by my exceptional parenting skills. I even earned the nickname The Fletch Whisperer. (Of course, my pride forbade me to let her think any differently!) But the truth is, I comforted Fletcher by simply “doing nothing.”

As I reflected on this experience, God helped me see that sometimes the most important thing we can give our children is the gift of our presence. Saint Francis of Assisi once said that, “We should preach the gospel everyday, and when necessary, use words.” I think that Fletcher has helped me better understand this profound truth.

In addition to my little fair-haired mentor, the scriptures also demonstrate how this “preaching the gospel by doing nothing” comforts those in agony. Think about Job’s friends. They hear this horrible news about their friend, they come to see him, and things are so awful, that all they can do is sit there with Job in his pain (Job 2:11-13). As long as their mouths stayed closed, they comfort their beleaguered friend; but, as soon as they begin speaking, Job’s condition rapidly deteriorates.

As you think about the ways that you show the love of Jesus to your children, I want to encourage you to spend a portion of your week by preaching the gospel to them by “doing nothing.” They will love you for it, your spouse will think you are the best parent ever (which of course you are), and your Savior will smile and lovingly rain his grace down upon you.

~ Todd

Filed Under: Autism, humility, humor, intimacy, Parenting, Relationships, Uncategorized Tagged With: , , , ,

On Losing It

March 24, 2012 By Leave a Comment

Today I told the kids that they could eat whatever they want and watch TV as much as they want all day long without asking me for permission.

I lost it today.  Repeatedly.

I spilled something on the kitchen floor, and then instead of cleaning it up, in a childlike fit of anger I grabbed an open bag of crackers and crumbled them on top of the mess that was already there.  At this point, my children noticed and came over.  “Mom, what are you DOING?” They asked in alarm.  “I’m making a mess,” I calmly told them.  My sensitive child began to cry.  They knew that my behavior was not rational even if my voice was calm and measured.  “Why are you doing this, Mom?  Stop!.”  “I like to clean,” I told my kids as I gave them each a hug. “Cleaning helps calm me down.  So I’m making a small mess so I can have something to clean.  Then I’ll feel better.”  This seemed to pacify both me and the kids, and I did feel better after cleaning the floor.

What does it look like when you lose it?

I am single-parenting a lot lately, which is exhausting as I need to manage my husband from afar and handle my own work load and my three children.  I go on two trips for work next week.  I asked my family to step up and help, but the truth is that they often look to me for every decision they are making which is really not the kind of help that I need.

Is it OK to want someone else to take over for me?  To make my decisions and just HELP?

I suppose these days are OK in moderation.

A friend sent me a much-needed email with portions of Psalm 73.  How timely:

Nevertheless, I am continually with you;
you hold my right hand.
You guide me with your counsel,
and afterward you will receive me to glory.
Whom have I in heaven but you?
And there is nothing on earth that I desire besides you.
My flesh and my heart may fail,
but God is the strength of my heart and my portion forever.
For behold, those who are far from you shall perish;
you put an end to everyone who is unfaithful to you.
But for me it is good to be near God;
I have made the Lord GOD my refuge,
that I may tell of all your works.
(Psalm 73:23-28 ESV)

I will close this weary post not with the wonderful Scripture above, but with my new favorite cookie recipe, from Joanne Fluke’s book “Devil’s Food Cake Murder.”  Scripture is life.  But these cookies … well, if Scripture had flavor and texture, these might be close.  Don’t let the absence of chocolate fool you, they are truly wonderful.

Raspberry Vinegar Cookies

Yields 3 dozen

1 cup butter, softened
1 cup sugar
1 tsp raspberry vinegar
1 tsp baking soda
1 tsp rum extract
1 1/2 cup flour
1  cup chopped almonds (or other nuts)

Preheat oven to (325ºF).
Cream the butter with the sugar. Mix in the vinegar and the baking soda, then the rum extract. Add the flour, and stir until well incorporated.
Line four baking sheets with parchment paper. Drop tablespoonfuls of cookie dough onto the sheets, spacing them out (about 12 cookies per sheet).
Bake the cookies in batches for around 18 minutes, until golden around the edges and on top. Let cool on sheets for two minutes, then transfer the cookies to a wire rack and cool completely.
Store in an airtight container (if there are any left!)

 

~ Nancy

Filed Under: Confession, Emotions, Epilepsy, Family, Parenting Tagged With: , , ,

The Roof Lady

March 23, 2012 By Leave a Comment

“What is this confidence you have?”  Isaiah 36:4

I think it’s interesting that bullies have been around since the beginning of time, and they can’t come up with anything original to say. It always reduces to, “I’m a big bad bully, I’ve done big, bad things, and I am going to do big bad things to YOU.” The longer their resume of cruelty, the more fear they inspire. And original or not, they can scare me spitless.

Take our recent bipolar storm.

The only way our home stays stable is through teamwork. We know this. My husband has a disorder of perception, so when his perception gets distorted, he triangulates his way back by taking readings off of those he trusts. That team functions as his emotional/mental GPS. “You, sir, are Here. Destination is There. Recalculating. ” With unified readings, he is able (with tremendous courage and humility) to climb out of a slide of misperceptions.

You can imagine the confusion it causes when there is not unity within his team. Given his disorder there is no way for him to tell which opinion is valid, and he stays lost longer … and more damage happens.

And that’s exactly what happened during this medication trial. For multiple reasons, it was The Perfect Storm.  The team fragmented, and the threats started ringing in the ears of my soul. “Look how fast this is crashing.  Even after 26 years of experience. There is no hope for you. Just give up. Your marriage will never recover. Your kids are doomed. What’s this confidence you have – in God? Not even God will help you.”

That’s why I LOVE the Old Testament stories! One account was so compelling, it is recorded several times – which is fine,  because I need things repeated when I am scared. (See Isaiah 36-37 and II Kings 18-19).

It’s a fascinating encounter between one good king, and a Stalin-like tyrant.  The tyrant had systematically destroyed whole cities, becoming famous for his cruelty. When he got to Judah, he even taunted their confidence in God, saying that God was the one who told him to come destroy them. He demanded Judah’s king capitulate and compromise, or else … and he told them in writing exactly how he was going to hurt them.

After tearing his clothes and putting on sackcloth, Judah’s king “took the letter from the hands of the messengers and read it, and he went up to the house of the LORD, and spread it out before the LORD.”

And that’s how I got the idea of going up on my roof. (It’s the only place around here I could “go up to”). I told our kids, the church staff…”if you see the news, and they have helicopter footage of a woman they think is crazy, up on her roof…” Trust me, if that’s what it was going to take, I was going to make the climb.

No, I did not climb up on our roof. (It would not have helped the case for my own credibility.)

But you can bet I got on the roof of my soul, and laid out every single threat against the well-being of myself, my husband, my children….

What is this confidence you have? Not even God is going to help you.

That’s the sound of a bully crossing God’s line. Bold blasphemy (another word for BIG MISTAKE). I belong to Jesus. He’s ALREADY paid a huge ransom to buy me back. He cannot be bullied, so there is no bully strong enough to doom me.

I can stand behind God, while He tells my oppressors, “Go BACK to your sandbox and leave Me and Mine alone.”

As God told the good king, “because you have prayed to me about this, I have heard you … I will send them back the way they came… I will defend this city….” II Kings 19:20,33,34

If you belong to Jesus, and are being bullied, for any reason, take every threat, and spread it out before the Lord. He already paid the ransom for you, and is ready to send your enemies back the way they came.

“Do not throw away your confidence, which has great reward.” Hebrews 10:35

To the roofs!

Joan

Filed Under: Bible, Bipolar Disorder, Marriage, Prayer Tagged With: , , ,

The Flow Down

March 22, 2012 By Leave a Comment

There is an adage about the trail of “garbage” flowing from highest to lowest point. I will spare you the particular vernacular, good Christian woman that I am, but suffice it to say that there is a certain curse word involved. I’m pretty sure it originated on “The Sopranos.”

From Noah (though he is beloved) flows much garbage. I’m realizing this to a greater daily extent now that we have a puppy. Our older family dog, Jackson is too tired to fight Noah’s molestations; his tail-pulling, his attempts to ride him (Jackson’s 40 pounds and a mere 18 inches high). God bless Jackson’s tan little heart. We’ve been spared many a trip to the emergency room by simple virtue of his advancing age and disinterest in fighting back. Similarly, our massive guinea pig is subjected to finger pokes through his habitat, while Noah grunts and yells at him. I often open Noah’s door to find the guinea pig high above his head like the cub Simba in the “Lion King.”

The fish escapes everything, what with that glass cube of a tank she lives in. Noah doesn’t like slime.  Plus, the hole in the top is too small for Noah to get his hand through.

Zelda, however? Well. She gives Noah the what-for. She is prone to bursts of puppy energy, nippy behavior, tugs-of-war, and barking fits. Unfortunately, all this feeds Noah’s aggression. Noah’s heart is pure, his spirit is merciful. But his lack of empathy extends to both his siblings AND his dogs. I’ve seen Noah wrap his hands around Zelda’s throat and shove her to the ground with all the force he can muster. I’ve seen him kick her and pull her ears. Thank God for another wonderful companion because Zelda thinks it’s all a game.  Despite these beat-downs, she continues to lick her gratitude and love all over the face of anyone who pets her.  And my pleas to Noah that “It hurts her!” and “How would you feel if YOU were kicked?” are useless. I get the “I’m just playing, mom!” or “I wouldn’t like it if someone kicked me.”   These are the practiced answers that temporarily satisfy me.   Then, when my back is turned he’s right back at it again.

This one puts up with it.

This one does not.

Of the group of children in the neighborhood, Noah is the eldest. He’s daily reminded to set a good example. And it starts with the “least of these” (Matthew 25:40) – the animals we’re blessed by God to be loved by. So my heart burns with the anxiety that the pets we love – they who don’t understand Asperger’s or the fact that Noah loves them despite their mistreatment – might be better suited to another house.  I worry that as the years wane, Zelda will become aggressive toward others because of what she was dealt at a young age.

Though these worries result in only hypothetical action.  We are animal “lifers.”   Didn’t give up dogs after having kids, didn’t flush the Betta down the toilet though she looked more algae than animal.  Didn’t even give away the guinea pig after Noah’s room started to smell like a petstore in the Florida everglades.  Our family has committed to loving these animals for as long as we are blessed to have them, as we are commanded to. “The righteous care for the needs of their animals” (Proverbs 12:10). We strive for righteousness in the care of all those entrusted to us. So Noah will go on being reminded to be gentle, kind, and mindful. Even if he doesn’t understand how.   And maybe we can redirect the flow.

- Sarah

Filed Under: Asperger, Challenge, Family, humor, Uncategorized Tagged With: ,
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