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Showing posts with label kids with special needs. Show all posts
Showing posts with label kids with special needs. Show all posts

Saturday, March 31, 2012

Getting Unstuck


I have a friend.  In the interest of privacy, we will call her Clare.  Clare is 11 years old and has a severe case of Downs Syndrome.  Mentally, she functions on par with most one and a half year-old children.  Claire is sweet and tenderhearted.  She loves Disney Princesses, shoes, pizza and legos.   More than anything in the world she wants to make her mom smile.

A few months after I met her,  Clare developed a habit-- of sitting.  She wouldn't dream of hurting anyone or disturbing anything....She will not cry or throw a fit.  But when others are playing or working around her. She is very content to sit.  Clare has lost her sparkle.  Her smile has become an endangered sight.  All day long, attempts to engage her result in a hunkered down resolve to sit.


No more drawing, or basketball, dancing or lego-fests.  No more proud attempts to write her name or show me the Walmart ad with the  new Ariel clips she just had to have for her hair.  Nope, let's just sit.  Bathroom?  Nah.  Don't need it.  What's that, you want to go outside?   If I must. As soon as we get out I will sit some more.

One day when she was particularly stuck, we had a pizza treat.  I set it across the room, where she could see it and smell it.  I was hoping that would act as the on a the carrot on a stick principle to rouse her.

There she sat, like a granite statue in a red polo shirt.  The only thing that moved were the pink and purple ribbons on those Ariel clips.  (My statue always chose her stations under the fans.)

Every time we transitioned to anything it was at least a 20 minute ordeal.  For weeks this went on.  I talked to mom and grandma sister and cousins, too.  They  offered little light, and no solutions.  She would refuse anything and everything for as long as she could in favor of any opportunity  to sit, and do nothing..  Positive reinforcement.  Play based learning and therapies. Self-directed activity time.  Reverse psychology.  Applied behavior analysis. Bribery.  Buddy systems.  Temporary removal of chairs.  I even checked her favorite shoes for pebbles.    My sizable bag of tricks was severely depleted.

I would like to be say it was my stellar teaching efforts, counseling skills or inspirational touch that finally unglued my Clare from her chair and lifted her out of her funk.  It wasn't.  It was Micheal:


No kidding.  A friend of mine doing was working on a college project.  She brought in an old Micheal Jackson CD to use in a presentation.  A few seconds of Beat It, and my sweet statue was groovin' and back to her old self.  From then on, when she started to get in a funk, we would pull out the Thriller album and get back to business.

Something about that song spoke to her.  It motivated her.  It connected her to what she needed.   Maybe that's what the Psalmist meant when they remarked:

The Lord is my strength and my song;
     he has become my salvation. Psalm 118:14

When we are stuck and we don't want to move.  The Lord is the song to get us dancing again.  Through music, through scriptures, through the loving support of friends and family, He sends that song, that hope and that support.  When we feel small, or insignificant, He is our strength.  When we have reached the end of our bag of tricks He always comes through.  Sometimes it's with a hug, or a word, or a friend...(or  maybe an 80's pop album.)

 What gets you up and moving? 

How has the Lord been your strength and your song?   


Tuesday, March 27, 2012

holding a hand

The old cliche says the best things come in small packages.  Daniel, at six, has a body barely bigger than a two year old.  His sandy hair never finds a correct place to lay.   His eyes hold a blue hue so strong you'd swear they had been painted on by a master artist.  Daniel shares his name with a Biblical hero known for strength and bravery.  Standing up to lions and kings was child's play.  Some people I know call that a shame that  little Daniel finds it difficult to stand at all.

They call him frail and weak.  Some whisper behind his back about how odd he is.  Some speak their derision directly to him, figuring he must not be able to understand.  Some fail to ever see him at all. Daniel wrestles with severe developmental delays.  He deals with gigantic stomach, bone, brain and neurological issues.  Something as simple as holding a book or a ball proves astronomically difficult.

Daniel's nerves lacked a component present in most that helps them fire and connect correctly.   This missing ingredient causes a  sort of perpetual short circuit.  It makes body movement difficult to control, or even muster in the first place.  After years of intensive therapy,  he is able to move, and even walk, if he holds to a trusted hand.  Without that contact, he remains locked inside his body, as a prison of brokenness.  With that connection, he enjoys a measure of freedom.  Something about that familiar touch allows those nerves to stretch and fire that much harder.  As long as he holds a loving hand. he could walk the mall,  or feel grass between his toes.   With a hand he can experience the autonomy of choosing the swings over the slide.  Without the boost from that touch  he  sits lost in himself.

We live in a culture that idolizes independence.  We champion complete autonomy and freedom  at every turn.  Our educational system strives for self-sufficiency.   Our movies applaud the self-made man.  We isolate ourselves so we can have the pleasure of accomplishing things all by ourselves.  A friend pointed out to me recently that one of the most popular songs at American funerals is "I Did It My Way".

Not only will Daniel never sing that song, he will never possess that independence we are swimming in.  He will work harder than most of us could relate to, while celebrating smaller gains than most of us would notice.  Some will pity him.  Some will mourn for him.  Some will choose to look away.  Still, others may see that by embracing a life of dependence, we too, cast off some of that brokenness.

 We often equate freedom and independence.  What is true on Forth of July, and in Armageddon movies stands ultimately false.  William Inge writes, " Christianity promises to make men free, it never promises to make them independent."   When we can stop chasing after a go-it-alone mentality we can follow the One who constantly seeks relationship.  Taking up the cross requires laying down our independence and the masks of self-sufficiency that accompany them. Walking with Christ means we hold to that trusted hand, never letting go.

I lift up my eyes to the hills—
       where does my help come from?
  My help comes from the LORD,
       the Maker of heaven and earth. 
                                     Psalm 121

Wednesday, December 28, 2011

The Gift of Stinky Cheese

I had just walked into work.  The only thing heavier than my work load for the day was the sigh what laid squarely on my chest.  The looks on the faces of most of  the children said they did not want to be at school today either.  One child caught my eyes and signed for me to come over.  With a grunt akin to, "Here, for you." He handed me a piece of cheese.


I did not ask for cheese. I did not particularly want-- or need--the six inch cylinder of cultured dairy product.  What's more, I did not feel I had the time to delve into the reasons why I had been given this unexpected gift, or what I was going to do with it now.  (It had been sitting unwrapped in the pocket of his seldom-laundered pants for several hours.  Eating it was not high on my to-do list.)   He handed me this rubbery, lint-covered room-temperature globule from his small stunted fingers.  His face beamed  and conveyed his thought:  decomposing cheese equaled treasure fit for a princess.   How could I refuse?  And yet, how could I accept?


Sometimes we are given these gifts.  Monogrammed note cards with someone else's initials.  That pea green polka dot shirt three sizes too big.  That tie was so great last year, it made an appearance again this year, too.  What do you do when you get something that makes you say, "Wow, you really shouldn't have? " or , "What were you thinking?" What do we do with the fuzz-covered fromage?


January is the time of year when stores will shout about no hassle returns and great customer service.  Web sites offer deals to give cash for store credit gift cards if there is no suitable replacement gift.   We are a world of consumers who want to believe that the customer is, in fact, always right.  Sometimes we can return or exchange our gifts.   But in the case of my Colby-Jack specialty, and many other gifts, it just doesn't work that way.


Growing up, my mother kept a gift closet. (She still has one now, but the rules and the aura surrounding said closet  have relaxed a bit.)  Once upon a time, the gift closet loomed strictly off limits to snoopers like me.  It was where all the future presents, treats, bribes, boredom-busting-treasures, etc. lived.   It also housed all of the unwanted gifts that someone else might  really need, or want.  Pea green polka dots have to suit somebody right?   I will admit that this sometimes worked well;  Other times it just didn't fit.    And I am left, again, holding my unpleasant cheese.


It's bad enough when Aunt Sally or Mr. Bill who lives down the street passes us unwelcome bounty. But  even the oddest things that-make-you-go-hmm can be dealt with. What happens with lifts gifts more difficult to contain, or when the giver is more mysterious still?  Often, we do not get the things we pray fervently and faithfully for.  Often in this broken world things just are not as we world think that a just and powerful God would make them be.  Sickness. Infertility. Poverty. War.  Loneliness.  Injustice.  Grief.  Need.  Exhaustion.  The list continues.  Maybe The family holiday time is filled with strife and anger instead of joy and peace.  Maybe financial worry is overshadowing the fearless faith you strive to have.  Maybe there is something in your life that makes you ponder, "Really? Is THIS what the FATHER of lights truly intended?  What am I supposed to do with THIS?" 


If you are facing some "fuzzy-cheese" situations you honestly wish you could return or re-gift: Take heart, my friend, you are not alone.  God is big enough to handle your honesty, and His Church is, too.  We are all in this big world together.


It seems easy to believe in His good and perfect gifts when they are good and perfect to our own eyes.  We get the job we wanted.  The relationship is healed and healthy.  Our bodies cooperate with the things we want to do.  Our family is safe and whole.  We can shout:


Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. (James 1:17) 

What when the answer is no?  When the finances are gone or the sickness remains or for whatever reason we are stuck with something we would rather reject?   The Father of Lights did not change.  He still wants good and perfect things for us.  We can trust in that truth.  Sometimes the prayers we pray are answered in ways that change us as much or more than the circumstances that have our attention.  And the God who uses everything from a talking donkey, to a prostitute, to some spit and mud to bring us HIS good gifts can work through even the fuzziest of cheese.  (Even if He did not cause the circumstances to begin with!) 


See, I walked into work thinking of a to-do-list to be done, rather than children to be served.  I thought of heavy responsibilities, rather than joyful duties.  The cheese refocused my heart to the heart of the matter at hand:  the mind and heart of the boy at my side.  


What unwanted gifts have you received?   How did you handle it?


What do you do when prayers deem to go rejected or unanswered? 



Thursday, February 18, 2010

yellow days

At Jake's school they use a color system to support self control and good behavior.   Green choices are great.  All go!  Yellow gives a warning.  Caution, slow down!  Red means stop. Rethink!    Of course, his teachers, his parents. and even the other students in his class held up "green" as the only respectable position.  Jake came into church one night looking like he'd been put through the ringer and hung out to day.  "Miss Laurie," he said, "why do they care so much that I stay on green?  Yellow is so much easier.  I am a yellow kind of guy." 

On this second day in Lent, I feel very much like a yellow kind of girl.  I have committed daily writing (something that would normally come easily to me) and today the thoughts are not flowing.  I committed to abandon my long term relationship with the snooze button. But after a night with only three hours of fitful sleep this morning we were reunited again.   On this second day in the journey, I have already stumbled. 

Yellow is much easier.  The bar sits too high to reach.  Surely, I am not meant to soar over it.  The race is too long,  Surely, I will not finish it.  But, I hear:  

"Even youths grow tired and weary,
       and young men stumble and fall;
  but those who hope in the LORD
       will renew their strength.
       They will soar on wings like eagles;
       they will run and not grow weary,
       they will walk and not be faint."
                          Isaiah 40:31

Yellow may me much easier, but we were created for even better than green.  If I can soar like an eagle, why would I settle for looking at the sky? If I can run and not grow weary why would I settle to trudge through heavyhearted?  We can.  We will-- if our hope lies in the Creator, Sustainer and Redeemer of all.

Hope is a nebulous thing.  We wish for 'green'er pastures.  We dream of brighter days ahead.   Politicians have won the attention of the world on the mere concept of hope.  Who can argue with hope?   But what is it really that we are talking about?   If our hope is in the LORD, we find our desires, our refuge our strength, and our rallying cry wrapped up in the essence of who and what He is.  This journey depends on that vision.  Forty days or four thousand years cannot exhaust it.

If we, insignificant and overwhelmed in our endeavors, are engulfed in the Lord, when we stumble we can get up covered in that renewed strength.   If we are consumed with Him, in that vision of hope, our failings can do little to diminish it.  On the second day of the journey, my shortcomings in terms of my   small, tiny, piddly goals have served to point me toward the His magnitude, His might and His mercy.  May I stop and revel in what I see there.    


 

Thursday, February 11, 2010

celebration

He doesn't say much.  In fact, his only completely intelligible  word is "no".  When I first met him, that is all I would hear.  Often.  Emphatic.  Painfully loud.  NO!.  The tantrums that would follow could literally shake walls, break blood vessels and stop traffic.  He always made his point.   It might involve laying on the floor and throwing himself around with a force greater than that of three (large) grown men.  It would absolutely involve screaming unmatched by any wild animal on record.  Anything to make his point.   Sometimes he made it for hours, just to be sure we were clear on the matter.

Honestly,  I can't blame him.  He lives a tough life.   Things didn't make sense.   Here he sat:  Ten years old in a completely new place.  Very little family.  Zero friends.  School had not mattered up to this point.  Talents? Unexplored.  Walking, and thinking are challenging.  Talking and writing-- next to impossible.   While he has little IQ, he has plenty of fear.  Who among us would not want to scream, "NO!"in his shoes?   We are taught when those outbursts  are and are not appropriate.  In the best of situations, we are given alternate ways to express ourselves.  At ten years old,  he had never been offered such dignity.

What could he celebrate?

 The day after I met him, people I work with began to talk.  I heard things like:  When will she quit? When will she be moved to a portable building?  What medication was I in favor of using?  (for him and for me)  How long before they kick him out of here?   How long will it take for you to "fix" him?

What could I celebrate?

In the beginning,  I  celebrated the ready availability of of prayer and ibuprofen.  I also reveled in the ability to close the door to critical eyes and unfair judgments. 

Along with the questions came the suggestions.  Suggested courses of action.  Suggested other schools.  Suggested medication (still for me and for him).  Suggested behavior plans or punishments meant to irradiate undesirable behavior.  No one suggested what I actually did.  In the midst of prayer and ibuprofen,   I celebrated him.

I stood in amazed at his lung capacity.  I wondered about his ability to stick to something.  I sat with him and began to notice more and more  to celebrate.   He was a hurting an confused boy, not a problem to be solved. He was crossing my path.  He was communicating the only way he know how, not trying to be hurtful or disruptive.  He was reaching out to me.

He was created in the image of God.  Creative.  Persistent.  Determined.  Enthusiastic. 

Weeks have passed.  He still doesn't say much.  Life still doesn't make sense .Still very little family.  Still very few friends.  Walking and thinking are still challenging.  But, my friend has leaned something.  He can celebrate.  Instead of being greeted the with violent defiance,  I get a kiss on the hand, and a  1000 watt smile.  Instead of three hour fits of rage, I see unbelievable kindness, and effort. His chocolate brown eyes sparkle with delight.  He throws his arm up in a glorious way, and the grunt that accompanies is soulful with the perfect touch of glee.  The boy can PARTY.  He can bark with "Who Let the Dogs Out?" .  And there is dancing.... sweet dancing.   He can count to three.  You and I may take that for granted.  Oh, no.  Every time (after every number) we erupt in momentous sidesplitting laughter.  One.        Two.        Three.

Don't miss your chance to celebrate.  In celebrating we find the parts of our humanity that reflect the image of God.  In celebrating, we soak in the grace that we were created to enjoy.