Tuesday, April 29, 2008

Time to Reframe

As families experiencing autism, I think we are called upon to do a lot of reframing.  I was most aware of this recently when we switched my son's school.  At first it seemed that his behavior was too challenging for school #1 although I loved their nurturing style and staff. On the surface, school #2 was more restrictive, more structured, and filled with more involved students. All this combined to make a rather heavy, dark "frame;" was he making progress or was this a demotion?

When it came time to prepare my son, my better self came up with an explanation that really was more accurate and not just a euphemistic marketing job.  In fact, Reid had transitioned from homeschooling with a private teacher into school #1 just 8 months prior.  His attendance had gradually increased from one hour to a full day as he built up stamina.  He was tolerating increased stimuli even without the presence of his familiar aid. The switch to school #2 was actually a marker of his success! He had mastered the first one; he had learned the mechanics of a school day; he had graduated from needing a one-on-one aide!  All reasons to celebrate.

Now, granted I could sell ice to the eskimos and have been known to "brand" some non-preferred non-negotiables around this house.   Nonetheless, I think you'll see my point. Perception is all we have.  Reframing our point of view is a healthy coping mechanism and a useful motivational tool.  It actually requires that infamous skill of perspective-taking and gives us practice being open-minded and submitting our plans to God.  

This past Sunday at church a friend asked if I had heard that morning's broadcast of This I Believe on NPR.  I highly recommend you click there and read or listen to this personal essay by a father and psychologist, Dr. Rosenstein about adaptation.  He contrasts his initial reaction to seeing his son flap his arms with the acquired knowledge and joy that results from reframing.  

That very Sunday morning we had two of our own examples to illustrate his point.  During the service, Reid had participated in reading a Psalm responsively a bit too emphatically (actually ending with an angry shout!)  Reframe:  I love this about him.  He got so into Psalm 98 that by verse 9 he was the resounding trumpet.  And it is hard to discriminate a group of fervent believers reading in unison from an angry mob.  All the nuances of tone of voice and inflection are blurred.  How great that he is tracking with the sermon and engaged in worship!

Later, at the closing prayer, some word tickled his funny bone causing a sustained giggle at an inopportune time.  "Small deals," is the term we've coined.  And yet in the decorum of the hushed Presbyterian sanctuary they can quickly become major embarrassment?  Or another opportunity to reframe!

The Lord is faithful to give us as many reminders as we need of those lessons which are most necessary to abundant life.  We never know whose teachable moment it is at any one given time--my own, my husband's, Reid's or the guy next to us.  In any case, He is faithful. 

photo credits: www.viewimages.com, www. digital-photography-school.com, and www.npr.org

Monday, April 28, 2008

God's "To Do" list

The gospel I thought I knew pretty well has been turned on its head (in a good way) this spring. I am going through a Beth Moore bible study with a new group of friends.  Living Beyond Yourself explores the fruit of the Holy Spirit in great depth and application.  Beth's teaching is so fresh and so profound that I find myself applying it to everything including this  SimpleTruths Service Movie.  Click it and be amazed at the powerful example of one man. Click it and be amazed at the false assumptions we make about ability.  Click it and imagine your own child's impact on the world.  Just click it!

"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do."
  Ephesians 2:9-11

God has designed good works for ALL of us to do.  ALL of us!

The word "good" has lost its meaning.  We teach our kids not to use it in writing; it is as meaningless and nondescript as "nice."  In reality, in Greek word, agathosune implies energized action and benevolence. Goodness is a product of the Holy Spirit fueling us to take action with good deeds--not that we are saved by them but we are saved in order "to do" them. Isn't it motivating to think that every circumstance, every tear, every struggle, every single victory, every friendship, and every conversation we experience in life has been ordained by a sovereign God to equip and prepare us for a Grand Master Plan of good works that He has already picked out and designed specifically for you to do?  Nothing is wasted.

What's more, is to think that the same loving, miracle-working God has done that for my son. Yes, my son who has the behavioral challenges, the language delays, the sensory issues, my son who has autism.  Just sit back and imagine that for a minute.

Friday, April 25, 2008

Fasting is Feasting--on God's Word

Wednesday was a great day.  Not eating (or cooking or doing dishes) but praying and fasting seemed to multiply my time.  Somehow on top of the usual demands of my day, I managed to walk 4 miles (praying out loud for half of it), catch up with 2 dear friends who live far, far, away, and draft a number of new posts.  My daughter noticed the next morning at breakfast that she too had a surplus of time or energy or both.  She did some sewing, re-learning the piano, playing a video game, and finishing next week's history homework.  

God's economy is unearthly.  Like His promise that when we tithe our storehouses will overflow rather than be depleted; we found when taking in no fuel we actually gained steam!  It gave new meaning to what the Bible says: "His strength is made known in our weakness."

As Paulette Britton wrote in the "Prepare" section of her website, fasting really is feasting on God's Word.  Call me a glutton, but I am back into two books which I'd like to recommend. Wednesday reinvigorated my prayer life and the momentum continues.
Praying Gods Will for My Husband/Son/Daughter/Wife by Lee Roberts is a series of books.  I bought the husband title and can easily change the fill in the blank with my son's name or anyone else's.  The prayers are really verses straight from Scripture organized by topics such as Attitude, Fear, Security, Tempted.  This makes it easy to find a relevant verse to cover any given situation.  For awhile I kept this in my car and as I waited for the kids in carpool line would pray through a chapter or two on their behalf.  

Praying God's Word by Beth Moore is a a prayer guide addressing 14 common strongholds from guilt to pride to unforgiveness.  It can be used the same way as the book above and has the added bonus of teaching from Beth Moore who is so gifted at sharing her own life experience in the light of God's grace. 

One of the reasons I believe God allows disability in the world (and there are many) is that it keeps us on our knees.  I don't always know what or how to pray and many times I don't even want to pray.  That's when I lean on these resources.  Praying God's Word back to Him is a surefire way of knowing we are asking for His will (not our own).   I don't trust myself anymore to know what is best for me.  I do trust Him.

Wednesday, April 23, 2008

Prayer Prompt

We have our own lexicon within the autism community.  Professionals of all sorts observe, analyze, and record data while about our children while hopefully simultaneously engaging them in meaningful interaction with love and genuine interest.  We have been blessed to have known and learned from some outstanding therapists in our home and in their clinics.  Early on I considered them personal tutors (to me) and learned from them.  That is the best way to become the quasi-professional moms that our kids require, right?

Do you remember when reminders became prompts? Does you husband respond like mine to aversives?  What reinforcers do you use to stay on your diet?

All kidding aside, we are more like our kids than different  We all need prompts.  Each and every day I receive one from the Systema's at Children of Destiny.  If you request it, they will prompt you too.  Just click on the Daily Prayer Subscription.  They ground each one in a Bible verse which keeps things doctrinally sound.  Since it is World Day of Prayer and Fasting for ASD, there are three verses today.  They also broadcast on Autism One Radio every Sunday.

“Is not this the kind of fasting I have chosen: to loose the chains of injustice and untie the cords of the yoke, to set the oppressed free and break every yoke?”
(Isaiah 58:6, NIV)

“Declare a holy fast ; call a sacred assembly. Summon the elders and all who live in the land to the house of the LORD your God, and cry out to the LORD.”
(Joel 1:14, NIV)

Dear Father,
As we participate in this fast today, we have two focuses that we are bringing before you in prayer. First, Lord, we pray for ______ (and name others with autism). We know that you are powerful and are able to heal. We come to you today and ask that you would send your healing touch in his/her life in ways we have never seen before. Father, we ask that you would touch him/her with your power, particularly for (name one, two, or several areas of particular concern to you today). Give us strategies, wisdom and understanding over every area in his/her life.
Secondly, we come to you on behalf of all those who are suffering with autism, and those who will be diagnosed in days ahead. Lord, you say that fasting helps to loose the chains of injustice and untie the cords of the yoke and that the oppressed are freed. In Jesus’ mighty Name, we come before you mixing our faith in you with the sacrifice of fasting. We boldly pray that the tide of autism will turn in the lives of individuals and will be wiped from the Earth for future generations!
In Jesus’ Name,

"When you fast do not look somber as the hypocrites do, for they disfigure their faces to show men they are fasting. I tell you the truth, they have received their reward in full. But when you fast put oil on your head and wash your face, so that it will not be obvious to men that you are fasting, but only to your Father, who is unseen; and your Father, who sees what is done in secret, will reward you.
(Matthew 6:16-18, NIV)

Today is the Day!

Thank you to those who are sacrificing their own perceived needs for food today and turning their thoughts instead to a powerful God who is able "to do immeasurably more than we can ask or imagine" on behalf of children struggling with what we call autism.  

Paulette Britton has organized this World Day of Prayer and Fasting for Autism Spectrum Disorders and led us with the following prayer.  I found reading it aloud more than once made it all the more meaningful and somehow revives it from the flat screen.
Today we beat on the doors of heaven. Lord God, Mighty God, as you have taken away the sins of the world, so too, do we have faith, even though it may be a mustard seed, to move this mountain of autism. In the name of Jesus Christ, our Savior and Lord, we rebuke anything the Evil One would do to bring harm to our lives, our kids in attempt to steal our joy in You. We use our heel to trample on his head and say get thee behind me, you have no power over our lives or our children for they belong to the Lord! in the strong and mighty name of Jesus Christ, Wonderful Counselor, Mighty God, Eternal Father, Prince of Peace...and by His stripes we are healed. Amen and Amen

Be sure to visit her site to read the story of  her son, Sam, and leave a comment if you are praying along with us.  The site also gives clear and valuable information on "How to Fast" and "Why we Fast" if it is new to you.

Tuesday, April 22, 2008

Do it Fast--Like Tomorrow!

What a way to talk!  I hope you don't talk like that to our kids or your spouse or anyone--let alone to God.  Let me explain.  

Tomorrow, Wednesday April 23rd is World Day for Prayer and Fasting for Autism Spectrum Disorders as conceived by Paulette Britton.  Enjoy her website as it explains how her friends and family inspired the idea and how Children of Destiny has joined forces to promote the day.
She also has some cute pictures of kids!

I don't fast very often or for very many but you can bet it is something I'd do for my kids!  and for Jesus!  As He demonstrated in his life, there are certain things which only fasting can accomplish.  The mystery remains as we do not know exactly which things those are...but I do know they'll be good things, based on God's character and His love.

Rebecca and Jack Systema at Children of Destiny sent a letter to their daily prayer subscribers today answering the question "Why Fast?"  It is delicious "food for thought" if you are considering joining us tomorrow.

Fasting removes spiritual clutter and puts us in a better position to receive from God. By fasting, we make it possible for the Lord to reveal Himself to us in a greater way,  because we can hear Him more clearly.

Why is that? Because fasting is a sacrifice of submission and worship unto Him. It is because we have given up something temporal in order to pursue something eternal. To the degree we allow ourselves to hunger after God is the degree to which we will be satisfied by Him.

The fruit of our fasting is God's to decide. Isaiah 58, the great chapter on fasting, lists the benefits including deliverance, giving, guidance, healing, increased protection, spiritual cleansing, answers from God, increased fruitfulness, and restoration of spiritual things that have been lost. 

Remember you can fast from sugar, coffee, television, or food. 
More tomorrow...

Monday, April 21, 2008

Secret "Talk Time"

We have coined the term "talk time" in our home to indicate a more intentional conversation time.  I think the term came shortly after our escapades with Stanley Greenspan and Serena Weider.  It may also have been an effort to brand a more focussed one on one ritual at bedtime.

In any case, it stuck.  Recently, our close-as-family friend (who was originally one of Reid's home program aides) learned that she was pregnant. Great news, long awaited but alas, she had to wait one whole week to tell her husband who was out of town!  

Well, at one point during her week of waiting, she and Reid were driving in the car.  Unable to contain herself and thinking he didn't seem to be really listening (mistake #1), she uttered her news aloud.  Much to her chagrin, Reid was listening.  (Eyes and ears work independently.)  He immediately reacted, "You are? That's cool!"  Lesson learned:  he only looked like he was ignoring her. They went on to pick up my daughter from a riding lesson.  As soon as she got in the car, Reid announced, "Hey Allie, Carla's going to have a baby!"  Carla was stunned again and improvised a cover-up lest the whole town know.  

When they had some time alone, Carla (newly reminded to raise the bar for Reid) explained that her news had to stay a secret until Sean arrived.  Once the "secret" concept was mastered, Reid started calling Carla to far flung regions of our expansive property.  "Come out to the swingset, or "I'm in the living room!"   At first we weren't sure why.  Then his behavior made sense.  On each of these occasions he would whisper, "let's talk about the baby...it's a secret."  He was creating special "talk times" where their secret would be safe.

I am thrilled not only that Carla is having a baby but also that Reid has again proven that he doesn't miss a trick.  

Where do you go for secret talk time? Who do you meet there?

Our recent experience gave new meaning to the song, "In the Secret" by Andy Parks.

"Can anyone hide in secret places so that I cannot see him?" declares the LORD. "Do not I fill heaven and earth?" declares the Lord."  Jeremiah 23:24

"...would not God have discovered it, since he knows the secrets of the heart?"  Psalm 44:21

photo credit: www.escapefromcubiclenation.com

Tuesday, April 15, 2008

We Deserve a Tax Break!

I know that you know that we have all spent way more money parenting our kids on the spectrum than we ever imagined possible.  I sometimes think of Reid as my little "$6,000,000 man."  (That makes us all Bionic Women!)

A recent post from Autism Vox outlines it pretty well.  Agreed. No contest there.  We could cooperatively lament til we're blue in the face.   Or should we do something about it?  

Here is a petition to sign if you agree there should be a tax break for families with children with special needs.

I know that you know that I know that you will.

Thursday, April 10, 2008

Who knew? it's National Sibling Day

Fortunately, I happened to call my brother today and got the news...which he heard on a local radio station driving across New York state. Since National Sibling Day falls during April I think it fitting to share a few resources I have found valuable for my daughter who has a twin sibling with autism. (Sorry David, I can't expound upon my undying love for you in this forum. That would be off topic.)

I love books and feel they hold the solution to almost everything. The recently published Newberry Award winning Rules by Cynthia Lord is outstanding. She writes as only another mom can, about her older daughter's experience in therapist's lobbies perpetually waiting for her brother (who has autism). The waiting room is such an appropos setting for a story about our families. They became a familiar landscape for us in those early years...as well as an accidental bonding time for one-on-one time with siblings...and a training place for listening ears. The sibling's awareness is shaped by hearing the therapist debrief with mom and the various moms talk to each other. I won't ruin the story but a twist in the plot occurs as the female character engages with another waiting client. It is a wonderful, realistic, aptly written story of inclusion in the end. It walks through pre-teen angst, love, embarrassment, and compassion all commingled.

The Ride Together is another great book for all ages. It is written by two siblings, Paul and Judy Karasik, about their family and their other brother with autism. The cool thing here is that Paul writes his contribution in comic strip drawings which capture the surreal and superhuman quality of our homes and circumstances. Judy writes her portion in traditional words which are always respectful, honest, and loving.

One more thing: Do you know about Sibshops? These programs are offered across the country often in Children's Hospitals or youth centers and are the brainchild of Don Meyer. They can be very valuable to our children at the right time. His resources will give you ideas of things to do at home.

OMG! In putting my hyperlinks in I ran across this great site. The SiblingSupportProject is paying tribute to brothers and sisters and their siblings with special needs. Cool beans! Guess who's behind it? Don Meyer. Thank you Don. Read them to your kids tonight! I'm so glad I called my brother today--by accident.

photo credits:  www.pent.ca.gov, www.cynthialord.com, www.theridetogether.com, www.siblingsupportproject.com

Wednesday, April 9, 2008

You Gotta Laugh

I want to see Lynnette Louise in her one-woman show, Thing to Thing to Thing. This energetic woman has enough heart and guts to adopt 8 kids with special needs. She has facilitated huge gains for them and many more clients through her neurofeedback practice. Her niche comedy reminds us to laugh at ourselves and our circumstances. Laughing out loud is healthy. Isn't it also the truest form of comprehension? We laugh out loud in acknowledgment of some truth.

When my son was maybe five years old, my mom posed a pointed question during a visit to our home: "Don't you think it's important to be able to laugh about 'it'? "It" was the "a" word which at that time was unutterable. As a family we were still grappling with acceptance. At that stage of the journey I was bearing down, attempting to fix, willing away any identifying aspects of my son's behavior. It is a sign of progress that now I do laugh.

Prerequisite to being able to laugh at ourselves (and our kids) is having a healthy perspective or world view. Could those moments when its "just not funny" be the times we've lost perspective? When I'm not able to laugh, I know I need to recheck my perspective.

The ultimate perspective is an eternal one. An eternal perspective enables me to not only laugh, but also cope, move forward, think clearly, and accept help from those around me. An eternal perspective reminds me that none of this matters anyway; we are but dust; this earthly life will seem like a quick exhale when we get to heaven; we all get new perfectly functioning bodies and brains in heaven; God is in control.

If you aren't laughing, ask God to give you his eternal lenses.

"A cheerful heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22

"Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "The LORD has done great things for them." Psalm 126:2

Friday, April 4, 2008

Living with Brain Dysfunction

Some struggle to know what it is like to experience autism or any other neurological condition. Books like Temple Grandin's Thinking in Pictures articulate and assist us in walking a mile in someone else's shoes. This thought provoking video of the "singing scientist" describes her perception, orientation, and functioning during a stroke.  It is a rare glimpse into the reality some encounter daily. Her description of making a phone call mid-stroke reminds me of my son's struggle with handwriting. It also leads me to ponder our leaving this life and the promise of heaven.

Jesus called out with a loud voice, "Father, into your hands I commit my spirit." When he had said this, he breathed his last.
Luke 23:46

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Revelation 21:4