All posts by bearfamily4

About bearfamily4

"Goldi" is my autistic daughter. She gets her nickname from the story Goldilocks and the Three Bears. Not only does she have golden hair but with it her autism begs for things to be just right. This is her way.

Goldi on Stage

 

The world became her stage when I heard  two doll’s voices in English Accents coming out of her bedroom:

 “You cawnt my dear. It simply isn’t possible Princess Aurora!”

Well, try to control yourself Princess Cinderella, everything is going to be awl right!

Goldi considers the world her stage. It is a  ritual to rehearse in the “backstage” of her room first thing in the morning.  When guests come for dinner, the dessert proceeds an  impromptu performance of  Annie, Cinderella, Mary Poppins or some other newly invented story. There have been raging reviews  like ”That girl can sing. That girl can act.”

People are  just being nice. I thought. They have to say that because she’s autistic . They are being forgiving and compassionate.  It’s not like she’s Daryl Hannah or Susan Bowles. ( both have autism) Although even THEY they had to start somewhere.

She started with one week of Theater Camp  downtown.  I clasped her hand and guided her to the welcome area where all the theater teachers greeted us  with articulate projected voices  and exaggerated gestures. Feeling Goldi’s  heart beat reminded me that her nerves were in a tizzy  like mine.

Golidi waved goodbye  I was escorted to the waiting area where I experienced the nooks and crannies of theater life.  Directors sat going over call back lists.  Young ones passed through with heads held high and soon belted out some familiar Broadway numbers about Tomorrow and Music of the Night.  Real live Broadway actors  from the  production of Book of Mormon came promenading in ready to WOW some Broadway wanna bes with some “I made it big advice.”  I people watched and listened and  played the part of wall flower.

All the while, I wondered about Goldi . Would she be fine?   Maybe I should have just had the neighborhood kids act out some familiar fairy tale with an old sheet curtain? Is she standing on the stage scrunched up with tears flowing  not able to follow some blocking direction?

Lord, help her to find Your pleasure in doing this so that she might discover that this can be done for Your glory.

Suddenly a voice interrupts my wanderings of worry:

“Hi Mom! Know what? My part is  going to be Flies! Here is my script. I have to practice my lines and tomorrow I am going to stand on the real stage!

There is a quick scene change from city to country. Closer to home, I breathe a sigh of relief for more reasons than one. She had a good time and she was smiling at the prospect of tomorrow.

The Final Day of Camp was performance day. We are sitting up in the theater balcony for  Goldi’s big debut in Pirates Take Broadway. An off the beaten path story of which I am clueless about.  But at that moment it is about Goldi.

Lord, work in her Your power so that she can “Break a leg”. 

The opening number unfolds and out she comes singing and dancing in sync. She knew to move to the left or right. She knew to cross over and line up and raise her hands into the air .

A few scenes later,  Flies (Goldi)  comes out in costume.   She wore a flower ruffly dress and  clutched a clipboard.   Goldi had  nine lines.  Nine lines that meant  nothing to her as far as as sense or story. But she was determined to say them because she called herself “actress.” The other characters moved the scene along with their memorized, perfectly timed lines and then……..all eyes turned to Goldi …… for her first line.  She buried her face in her clipboard ( her cheat sheet) and …..a whisper floated out into silence…nine times.The scene progressed. The characters played on each other …..even Flies. The story unfolded as planned.

Lord,  help her to be who you made her to be despite autism so that others will know that you are greater and that you have overcome a world  that might throw tomatoes and reject her.

The finale: “I am a Pirate Broadway Baby”. There was stomping, stepping,  and gesturing and there was Goldi, singing in harmony with her feet and hands.  The bows at curtain call prompted enthusiastic applause.

Lord, if there is any success in this it is  because of You.  ­There is something great in her from YOU  waiting to come out .  Is this a gift you gave her? For some amazing purpose? 

In the comforts of  home, Goldi rehearses backstage in her room and watches other plays. Away from the lights, camera, and action, she watches her  filmed Pirate performance and her eyes are aglow with pride.

The  Pirates take Broadway strike is done. Right now, there is a sold out production of  Broadway musical Book of Mormon on that same stage. That same stage– that for a moment welcomed and housed a young autistic girl  who dreamed of being in a real play, in a real theater.  She gave it her all in pursuit of dreams come true.  Some may look at Flies and say    “exit stage left”.    But Goldi cares little about critics.

In faith, I think she knew something that a Producer or Director of the world’s stage would not. In faith,  Goldi was on stage- displaying a good work created in her. A gift from above  for some good greater purpose. Goldi was on stage. She played her role from start to finish and….. all because He put the good work in her…. all to show the Glory of God.   Goldi on stage may one day result in a standing ovation.

James 1:17-21  English Standard Version (ESV)

17 Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.[a] 18 Of his own will he brought us forth by the word of truth,that we should be a kind of firstfruits of his creatures.

Phillipians 1:6

And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ

 

 

 

 

 

 

 

 

 

 

 

Yesterday, Today, and Tomorrow

 

“What’s Tomorrow?” Goldi asks stroking the satin rim of her blanket.  It’s her  routine question that sometimes prolongs bedtime a bit.

Tomorrow is another day.” I said.

“But what ‘s happens in ‘Another day’? she asks.

I stare out the window  into the world held in The Hands that faithfully gives us another day .

“Let’s see… today you woke up and said ‘It’s Earth Day! I need to dress up.’ ”

Earth Day and she dresses up not down.  Earth Day- the day we celebrate the beauty we see around us and get into the dirt…..which Goldi seems to become one with at times. On Earth Day she chose to wear a green ruffled dress and a purple bow in her hair.  It was her idea.  No clashy wrinkly clothes and wind combed hair. Yesterday, she was Pippi, today she was Princess.

“Maybe tomorrow I can wear my pink polka dot dress.” Goldi says with a smile.

“That would be lovely. ” I say.

I start to inch away from her bedside until she asks:

“But  Mom, what will I DO tomorrow?”

“Let’s see… I say staring out into the sorry, world full of teasing and pain.

“Today you helped  young Janey at school. You read her a book and she liked it so much she said “More!”

”  I was sitting  with her in the big rocking chair in our classroom,” she says.

Goldi used to speak in tongues.  She had all the inflection , expression, and eye brow raising gestures. But we couldn’t understand a word. So after several speech pathology lessons,  she was finally  passed “Mommy and Daddy” and she began to open up books, see words, and voice them like music.

Goldi feared younger kids. They were like little puppies wandering all over sniffing and slobbering. Goldi jumped into my arms at the sight of kids like Janey. That was Yesterday, today she is sitting by them side by side reading a book.

“Maybe tomorrow you could read The Little Red Hen. ” I suggest.

“Oh, Janey will love that story!” she says.

I stroke her forehead with my fingertips hoping for her eye lids to wander into dreams.

“Mom,” she says gripping her covers  ” I don’t want to be scared”

“Well…. I said looking out into the world held by the Hands of the One who lights the day and night.

“You made friends with a Wolf, and an Eagle and you’ve ridden a horse. ”

Goldi stood frozen in her tracks at the sight of Ernie the Eagle. He was a giant mystery towering over her.  Ernie was her school Mascot.  He made several appearances at assemblies that Goldi refused to attend. The Horse  was a part  of a field trip activity. She  patiently awaited even the most impatient riders who commanded “Giddy up!”  But then, when visiting a water park, she ran to Violet the Wolf and hugged her. She high fived Ernie at the school pep assembly.  Before that,  she  was crowned Queen out for a ride on her prized horse and her second grade class cheered. Yesterday, she screamed at the scary unknown. Today, she stands proud of her success.

“What if it’s Saturday? ” Goldi asks.

“Well… I say  looking out into the world held in the Hands of One who stills time and quiets all that lives and breathes,

“Your fairy is ready to swing from the treetops. Your princess is ready to dress for the ball.”

Goldi’s toys  were lifeless for many months. Fun was laying each one down to sleep. No feeding a doll or taking it for a walk.  No setting up for a tea party. For the first time in my “childhood” the complexity of play became mind boggling.  What kids were born to do … Goldi was born without.   Teaching her the play schemes was like working through the Pythagorean Theorem.  But then.. she began to set the dining room table for tea and seat many “guests” for conversation and cookies.  She set up a village of castle, fairy house, and doll house, and “Once upon a time ” becomes a reality.

“I could set up a restaurant and my dolls and princesses could be the customers. ” she shares.

“Sounds like real fun.” I say with a kiss.

“It’s nearly 9 o’clock,” I say as I draw up the covers.

“But what about tomorrow?” she asks.

“Well….. I say staring out into the world held by the Hands of the One who guides our dreams according to His good plan, “Tomorrow is one big surprise.”

“What kind of surprise?” Goldi asks with light up eyes.

“A really wonderful one. Better than a tea party,  horseback riding like a Queen,  making friends with Ernie or Violet, reading to a friend like Janey, or twirling like a Princess.  Every Tomorrow has a surprise waiting. ”

Tomorrow seemed liked a million years away since  the Doctor’s told us those dreaded words “She’s autistic”.  It seemed to make each Today a chore or a hurdle. But now in the accounts of all the Todays – we see the Guide who brings the Hope of what lies in Tomorrow.

“Good night Goldi” I whisper.

But Goldi does not answer. She is busy dreaming about that big surprise in Tomorrow.

Psalm 147: 11  The LORD delights in those who fear him, who put their hope in his unfailing love.

Hebrews 13:8 : Jesus is the same yesterday, today, and Forever.

 

 

 

 

 

 

 

 

 

Nothing to do with Christmas

 

At 6 am one Saturday morning, Goldi, soon to be “Star of stage and Screen,” announced her favorite words- “Let’s do a play.”

I sat in the kitchen with my tea at hand making out my Saturday list: wash, clean, groceries….all about the practice of being organized and running the house-  battles with her need to create and express.

“Well, we have lots of things to do today,”  I said working my way OUT of doing a play at 6 am with darkness all around and promises of the sun’s rays still not yet realized.

“Put down Baby Jesus Play ” Goldi said pointing to my list.

“B- Baby J-Jesus Play!” she sounds out to awaken my sleepy ears.

I concede and write it down. At the last written letter, she springs into a plan.

“Who will be Mary?” I asked with a new fresh paper titled  “Baby Jesus Play Characters.”

Goldi rummaged around her Barbie box  and found Belle. She draped one of my good, (probably handmade in Cyprus- handed down from my grandmother)  napkins over her to make her look more the part. She does the same for Prince Charming.

“He’s Joesph,” she said seating them both side by side. She  the two off the list and proceeds.

“Now what about Baby Jesus?” she asks.

Her eyes wander around in thought and she suddenly runs in her bedroom. Out she comes with a soft teddy bear wrapped in her baby blanket . The one she still sleeps with and caresses each night.

“Mom, I need help wrapping this baby up!” she cries.

I couldn’t even do the swaddle wrap very well when Goldi was a baby.But she wants me to wrap her teddy bear up as tightly and snuggly as Mary did.

“Never mind. ” she says laying a bundle of pink on the floor next to Princess Belle – ( I mean Mary) and Prince Charming ( I mean Joseph) .

” We still need animals.” she demands.

“You could ask your brother if you could borrow some  of his. ”

Immediately she inquires and with a silent nod from her brother , she hauls a blue box full of mostly forest and jungle animals. “We’ll need this deer, pig, and of course this  tiger. ”

Surely there must be at least one sheep or donkey in that collection? I sigh.

Goldi has chosen Pinocchio as one of the wise men – in fact there’s only 1  wiseman and an angel off her Christmas tree. No shepherds.

“There. Now, it’s all set. ” she says with deep satisfaction.

I ‘ve seen many creches.  Fisher Price, Peanuts Characters. Veggie tales,- cute but not the kind you would put on your fireplace mantel in my opinion. The one Goldi has made the  base of our very fancy Christmas tree , has got to be the most far fetched one ever. It’s not the Willow Tree beauty it is almost like the Herdman invasion of the Nativity.

“Once upon a time,” Goldi begins in an English accent,  there was a woman named Mary who married Joseph and she was going to have a baby.  So when the baby was born, he had a good favorite sleep.  Mary put him in the manger. The angel ( which at the time was laying on the floor face down)  said “Don’t be afraid. This baby is the Best one in the World.”

I nod at the truth told.

“Yes, He was the best in the world wasn’t He. I confirm.

“Then the kings wanted to see baby Jesus.” Goldi continues.

She brings Pinocchio I mean the wise man)  and some animals up to the baby and says ” Oh, isn’t he so cute?”

And that was the Best Christmas ever. THE END

“Okay, now, I would like to watch Frosty the Snowman?”

I am frozen with disappointment. The play critic in me wants to cry out ” inaccurate, brief, unrealistic, and performed by a real novice in Biblical knowledge.”

What have we  done to give her this mixed up notion that a tiger,  Prince Charming, and Bell were present while Pinocchio the Wise man gave the baby nothing but a compliment while the angel just lays face down saying little and singing nothing?

“Isn’t there someone who can tell Goldi what Christmas is all about?”  I  shout in my brain with my  Charlie Brown voice.  The true meaning of Christmas lost in a bunch of meaningless , “nothing to do with it” toys.

And there’s been so much nothing to do with Christmas. First is was talking again about Mrs. Claus needing to come and not Santa.  He can stop and have a cheeseburger for the second year in a row. Then it was singing Jingle Bells at the first snowfall Thanksgiving Eve. We’ve been “booed” and now  “elfed” so we needed to elf someone back. Sigh. I wonder if Cupid is warming up as well for his big day in February.

But then… there was soft singing.  At the closing down the set of the Baby Jesus Play 2015  Goldi was singing : “O come Let us Adore Him.”  The one we  sang  that morning before Thanksgiving when we saw the first snow. The one we made Goldi sing over the phone to her Grandma who lives an hour away.  The one that we all sing hopefully not just on The Day but all year long.  Goldi was singing it.

In sudden amazement I found God with us. My faith was so fixed on the should be and not on the amazing possibility that Goldi knew in faith God with us.   It is in many moments of journeying with an autistic child, that I in faith need to believe that things deemed impossible might someday be reality- all because of Immanuel – God with us.

Goldi was adoring her Savior through her very own Baby Jesus Play- Barbies Pinocchio, tiger, and fine linen napkins from Cyprus.  Immanuel – God with us- wrapped up in her baby blanket that she’s treasured all her life, surrounded by  jungle animals lovingly shared by her brother.  This was her adoring- to show Jesus dwelling with us. Dwelling with us on this journey of autism , this Christmas and forever.   It was the Best Everything to Do with Christmas Pageant Play ever.

Matthew 1:23 BEHOLD, THE VIRGIN SHALL BE WITH CHILD AND SHALL BEAR A SON, AND THEY SHALL CALL HIS NAME IMMANUEL,” which translated means, “GOD WITH US.”

Homeprints

Cleaning and polishing  swallowed up many hours of our life  in the selling of our house.  We  erased  13 years of memories in a few weeks of time.

“What did  you do?” I shrieked one day when I found several princess stickers stuck to the bedroom closet door.

” It’s pretty! Goldi proclaimed.

A little Goo gone and  endless hours of nail biting- gone.

Kicking filled the room room. Goldi was having one of her “moments.” Her thunder could compete with a real storm.  Magic eraser time, soap and water blew it away.

Between bites of food, Goldi paced back and forth at dinner. While watching the part when Cinderella sings with the birds, or Wilbur runs after Fern, she jumped, leaving continuous footprints on our hardwood floor.  Several floor polishings later, it was print free.

You’d have to squint to see what once made our home sweet. No one would ever know that an autistic girl lived there.  A new family has hung their hat and begun to print up the house. Our life exists now in a “sparkling new” home.  According to all the visitors thus far, it even smells new.  The walls are freshly painted all smooth and clean. ( But alas, you breath or pass by and a handprint falls on them)  It will take our own prints to make this empty canvas of a house sweet. So let the housebreaking begin.

Leaving a print comes natural for Goldi. There are  marks on the wall and floor from her feet and hands. (Many exciting new experiences equals  many jumps. )  There are play dough smears and crumbs on the garage floor because of summer afternoon creation. There are finger smudges on the large living window when she’s pressed herself against it to see the best view. There is the inevitable sticker residue on her closet and bedroom door.  I want to keep that wonderment of all the possibilities of memories in our new home fresh.  But after three  months of living here, our print is spreading around and penetrating the house with  everyday smudges,  wrinkles, smells,  and holes. These are the  prints that make home sweet.

Sweet is the print making Goldi leaves. LIke when  she greets each house guest with light up eyes and jumps three feet high making the house rattle and leaving a footprint.  Sweet is when she blares out her Broadway voice and her song echoes and travels to every corner of the house. Sweet is the staging of many dolls and  trinkets that  clutter her room and await for her to tell their story. This house as fresh and handsome as it is,- is now sweet because of the  print of a creative,  vivacious gal, and she continues to be limitless in the pursuit of home sweet making.

Sweet is  when dinner grace is said,  and there’s a thousand things to be thankful for and just one “please give me”.  Sweet is her noticing the sky around our house and the way the sun makes it glow over the treetops.  Sweet is the way she knows just the right cupboard for the band aides when someone she loves sheds tears . Sweet is the way she retells the stories of God’s print on this world on our downstairs stage, and says with all her might “I am the Lord your God.!”

A home sweet home print is left by all who chose to take to heart as Goldi does, the job of leaving this sorry world a better place. Smudges, fingerprints, holes in the wall, yes, our autistic Goldi-  is making the world a better place.  Only the Lord of this Earthly Home has made her prints sweet  through His glorious power just as he does for each of us if we so let Him.  The Lord of it all chose Goldi to show this to me and anyone else who chooses to pay attention.   It’s a homeprint that is being treasured up in heaven- our Sweetest of Homes.

2 Chronicles 7:15-16 “Now my eyes will be open and my ears attentive to the prayer that is made in this place. For now I have chosen and consecrated this house that my name may be there forever. My eyes and my heart will be there for all time.”

Brother has an autistic sister

We finally spoiled the secret.  It was one Sunday afternoon. We prayed for the right words. We sat at the kitchen table and spilled the beans… “Goldi has autism,” we said to our kids.

I was teary.  My husband  sighed,  and gave a “it is done” nod.

“Can I have a snack now please?” said Goldi’s  brother.

Didn’t you just hear me?  I thought.  Your sister has autism! Don’t you know what this means? It’s our forever thorn in our side!  I longed to let loose a silent scream.

“Do you have any questions?” asked my husband.

“Please, may I have a bowl of cereal?” my son asked.

No further comments.  As he crunched along, a floating speech bubble floated from his head- So my sister has autism. Let’s just carry on with life. Crunch Crunch.

I had pictured a long heart to heart talk. I had pictured  some “It’s not fair screams from Goldi”  Some tears and prayers and hugging. Nothing.

Our son ponders. He questions. He remembers.   And after sleeping on it for some time, he asked,”So how come I don’t have autism?”

“You weren’t born with it.  Goldi was. ” I answered.

He goes deeper and gets theological – he is after all going to be a pastor. (or maybe your next congressman- these days,  I choose the first one.)

“So if God made us, why did he make Goldi with autism? I thought God made all the good things and all the bad things the bad people made? ”

When I was ready and waiting, he says nothing. When I am least expecting it, ( like when I am trying to figure out how to scrape the burned gravy off my good cooking pan. ) he socks it to me. 

“Sin made people bad. Even though there are bad people and bad things, God made everything good first. Sin tried to mess it all up. But God is making it all good again. ”

“I am going to ride my bike. ” he said.   The door slams and I see him whiz up and down the neighbors driveways.  Carry on with life.

A month later, he stomps into the house.

“Mom!” It’s not fair. I want to have autism too!”

“You mean, you want it to be hard  for you to do things like play with your friends, read, write, go the zoo, and eat at a restaurant?

” I  don’t mean that.  She doesn’t  get the same  consequences  I do.”

“We have to do things different for her so that she understands. Her brain is different than yours.  She can’t understand some things as quickly as you sometimes. You are both learning to be the best you can be. ”

All of the sudden, I see him racing cars on the kitchen floor. Carry on with life.

Since spilling the beans, I’ve carried on with life while still  being stretched and challenged. I’ve worked to ready the right words for those just in case moments. Lord help us. Throughout all our carrying on with life, I know he’s thinking, concluding, and questioning. And all along he races his cars, rides his bike, reads his books, draws pictures,  – and carries on with life. He does what he knows to do. He does what he does best.

One morning, I find them snuggling in the same bed.

“He’s so cute!” Goldi says. “He’s the cutest little kitty.” she says as she gently pats his head.

“Meow” says my son snuggling and squeezing Goldi until she giggles.

His sister has autism. Carry on with life – with love.

Verses from 1 Corinthians 13:  If I have faith that can move mountains but have not loved. I am nothing. Love is patient and kind. I have faith, hope, and love. The greatest of these is love.

Matthew 12:50

For whoever does the will of my Father in heaven is my brother and sister and mother.”



 

Hanging our hats and laying down our heads

Two storage pods plunked down on the driveway causing a serious wondering from Goldi. “What is that?” she asked.

“Two big boxes. We’re saying  “Goodbye” to some things for awhile so that our house looks ready for someone else to live here.”

Goldi looked into the distance .  The sound of the words “Someone else will live here” seemed to create shadows of what might be. I saw them in the distance too.

Gradually things vanished from the house and Goldi  made inquiries.   “Where’s my stuffed dog?” she asked. “Where’s that purple chair?  “Is my doll in that big box?” Home looked empty as our fingerprints of living were removed all around.

Goldi kept home by pretending  and storytelling in her room. She rode her bike around the neighborhood.  She jumped when she saw someone come up the front walk. She made spill over splashes in the bathtub. She hung her backpack on a hanger in the closet.  She nestled down in her pink flower bed and slept.  She threw her sock and shoes in the hallway and ran around  barefoot.

She spent time in a home more permanent- her grandparents house.  There she could make music with her grandpa in the big room of great acoustics. She explored the ponds. She lay her head on the comfy couch and rested.  She threw off her socks and shoes in the mudroom and ran around barefoot.

As we readied our home for someone else’s life, we began to “live” in a home that was still in the making. The first several visits to our house under construction,  came with protest.

“This is not my home!”  Goldi  screamed each time we went the “wrong way” home.  My images of  life in our “dream house” had spots of worry and fret.

“Look , this is where we’ll eat as a family.” I announced one day as we walked into our skeletal like kitchen.

The well thought over  island was just newly constructed. Dust  and builder slop decorated everything.  Despite protest, promises of picnic, play, and props ( toys to bring along)  finally coaxed her to cooperate.

“Let’s eat like we live here. ” I said unpacking the fast food picnic. But with no chairs,  lighting  or attractive surface, our family dinner table looked more like a tool shed.

Quickly I grabbed a small forgotten ladder,  and turned over a big cardboard box. Immediate seats began a transformation to a home sweet home feel.  Hungrily I dove into my cheeseburger. Goldi’s brother chose the cardboard box and bit into his and Goldi, without prompt or persuasion, tore off her socks and shoes,  sat on the ladder. and nibbled on a chicken nugget.

While I wiped the picnic crumbs, Goldi stood and announced “Time to play Hide and Seek! ”

And she began to run around the house barefoot.

Months later, we’ve moved to our newly built home. We’ve packed up and brought everything in the world with us-including  memories of our first home as a family.  Goldi makes big splashes in the tub. She stories and pretends with  her dolls. She rides her bike all the way to the grocery store.  She hangs her backpack and hat on a hook in her very own locker. She nestles down on her pillow in her painted pink room.  She throws off her shoes and socks and runs around barefoot.

We plan to live here and enjoy. All the while knowing this home too is only temporary.  For there is another being prepared for us more glorious than a blue print of dreams. Our Eternal Home awaits us someday as our Eternal Family does too.  And I imagine when Goldi gets there, she will throw off her shoes and socks and run around barefoot. She won’t put on shoes or socks again.  Home Sweet Home at last.

“Foxes have holes, and birds of the air have nests, but the Son of Man has nowhere to lay his head.”  Luke 9:58

Remembering the Reading

Expressive hushes awakened me when Goldi first became friends with books. I would find her sitting on her bed with many books pressing on top of her.  The  weight was like an extra blanket warming her with words she would mysteriously hear first only in her mind.

When Goldi read aloud, there were windy whispers,   deep bellows from her belly, or fluttery songs.  She knew to raise her eyebrows or brighten her eyes as she browsed the pictures. She had the storybook voice that caused me to turn up my ears. She knew herself a reader without really reading.

At times, she turned the pages as though the book lay open on a windy day.  The closing of the book said” I did it. ” She could go through the motions of real reading. But  it really wasn’t.

How to teach an autistic child to read? Same way as everyone else? A special way like no one else?  The teacher in me offered diagnosis.  “She’ll just learn to memorize sight words and put those together to make sentences. ”  But the mother in me wanted  to have her snuggled on my lap, finger hop over the words, and soak in a good story forgetting the world around us.

Goldi began to know stories by way of DVD.  ( The Weston Woods Series from Scholastic)  She couldn’t help but love those  classics all “jazzed up”.   I  continued  reading aloud- in fast forward mode because Goldi’s quick page turns forced me to cut to the chase for each story. To her, the story just breezed by.

Then Goldi , the first grader,  held Frog and Toad to my eyes and said “Read this!”

Well, I thought She’ll race through this story,  but at least I’ll get a chuckle from Frog and Toad.. I held dear the. humor and simplicity of the two fellows. We turned to the story about  the garden. Toad wanted one just like Frog. He planted some seeds then got impatient.  “Now seeds, start growing!” Toad yelled as he laid down on the dirt.

I  looked at Toad wiping his sweaty head in the last picture. “You were right Frog,  Gardening is hard work.” says Toad.

I lay the book aside laughing inside at the way Toad went about taking care of his garden.I took a look at old tired Frog and contemplated the hard work he did just to grow a few seeds. Reading with Goldi was hard work.

“Now Goldi, slow down and pay attention to the whole story! Now, Goldi, follow along as I read. Now, Goldi start reading!” I wanted to shout.  To get Goldi into really reading, it was going to take a miracle.

I was  ready to give my usual orders “Brush your Teeth”  when Goldi picked up the book. She opened back up to  The Garden Story. She smiled and giggled. She turned to the page where Toad was shouting at the newly planted seeds, read his words with her best Toad voice. and belted out her contagious belly laugh. It echoed throughout the house.

Then she  turned to the beginning of the story and began to finger walk along.

“One day Frog was working in his garden,” Goldi read. “It’s your turn mom!”

With a scratchy stunned voice, I uttered “Toad came along and said “You have a very nice garden. ”

Goldi snuggled her head into my shoulder and tip toed along with her eyes and ears soaking in the story.

“Now seeds start growing! ” I shouted in my best Toad voice.

Goldi belted out her laugh again and rolled over in giggles.

To me, it was a little  miracle shown to me by the One who is working out His glory in an autistic girl named Goldi. And it began only with two simple but glorious words- “Read it again.”

Wonder and be Astounded, For I am doing a work that you would not believe even if you were told. Habakkuk 1:5

 

Autism in April

Some show off a blue strand in their hair. Some shine their outdoor house lights.  Niagara Falls displayed its majesty  in blue.  “Light it up blue” says Autism Speaks.

Before Goldi blue was the color of the sea near Grecian islands and it took my breath away.  Blue was the color of the summer sky. It was the color of the early spring forget me not.  It was the ready to eat shimmer of berries from the shoreline. Now, it is the color of Goldi’s eyes when they smile with life and this month blue means autism. 1 in 88 children have it. Most are boys- thus the stereotypical blue (and something about light particles and easier to shine this type of  bulbs )  Be aware- there are people out there with autism.

As a mom of an autistic child, I wonder,  what do I pass on to deepen awareness? There is SO much to be aware of in this complex world. From wars, poverty, pollution, and even things as astonishing as the decreasing population of bees. ( Our honey supply is in severe shortage.)  We each live in our own little world. I’m sure I can hear a “so what?” to the idea of April is Autism Awareness Month.

You might find it interesting to know the names of celebrities with autism.  Dan Akroyd, Daryl Hannah, Temple Grandin, Albert Einstein, Mozart, have it.  There’s some endearing children’s stories like- The Friendship Puzzle by Julie L Coe and My Brother Sammy is Special by Becky Edwards and David Armitage. There’s a website called Greater Good Network that sells really unique items.  ( I bought a cool top and skirt made of colorful scarves) . Proceeds can go towards autism research. There’s a place called Benjamin’s Hope, a home for adults with autism and a retreat center for families with autistic loved ones.  Some colleges including my Alma Mater have expanded their special education program so that graduates will qualify to teach autistic children.  Some snippets of awareness for you.

You don’t have to look far to meet and greet and an autistic person.  They are in the classroom, maybe jumping and flapping. Maybe being pulled out for a much needed sensory break. They are in the restaurants spoon tapping their demand for their meal. They are in the grocery store with a glazed look pacing. They may be living next door where you may hear some banging or screaming blaring from the house. Don’t call the cops- they’ll be fine.It’s only a matter of time before they are calmed down and more like “themselves” again.

They are also at the basketball game singing the National Anthem in front of thousands, winning over people like Simon from American Idol. They may not be talking out loud, but they are expressing the richest of words through the magic of an I-pad. ( see the website Josiah’s Fire) They are on talk shows tickling our funny bones as they share interesting Presidential tidbits. They are painting works of art that could easily be housed in the National Gallery of Art. They are featured in movies like Rainman and Temple.  

And there’s our autistic girl Goldi. She was diagnosed the fall of 2010, and I became aware. I googled and read and interviewed and conversed to really become aware. After nearly 5 years, I realized something I had been ignorant of since that dreary day of diagnosis. It  catches us by surprise and  reminds me to have faith.  When Goldi’s  blue eyes light up, I know it’s there. When she belly laughs,  glides like a swan on her bike, articulates a sentence as though it were a song,  welcomes a guest in our home as though they were royalty, and shows a gold star at the top of those dreaded math drill worksheets. That “Light it up Blue ” moment is God’s amazing greatness and power displayed– teaching me that He is so much greater despite this life’s permanence of something  so wrong. With this awareness,  I feel lit up in all  colors. It’s more like the feeling of seeing the glory of a rainbow.

Greater is He who is in you than he who is in the world.  1 John 4:4

“Did I not tell you that if you believe, you will see the glory of God?” John 11:40

As for you, you meant evil against me, but God meant it for good. Genesis 5:20

Hoping for a Rainbow

Image result for picture of a rainbow

 

“Don’t send me anymore links to feel good stories!” he vents.  “They show autism in too positive of a light. Reality is the head banging, screaming, stinky, severe autism !”  This Dad doesn’t expect any miracles despite  therapy  from A-Z. He looks over at the “Greener Side” at those fortunate parents of talking, potty trained autistic children, and says “You don’t know the dark side.  I can’t even go out to my favorite pizza joint.”

His words slapped me with guilt. I  am one of those “fortunate” ones standing on the Green side with a child only mildly autistic.  I’m not drenched in therapy sessions.  Money and time are the only roadblocks to our favorite pizza joint.   Autism does not threaten to haunt my daily life.

I  get  teary over those feel good stories of ASD kids: the girl who sang the National Anthem- so inspirational, the student who scored the 15 pointer before the buzzer- thrilling.,-the entire crowd in a restaurant thinking nothing of a boy being a little disruptive – heart warming!

“God won’t give you what you cannot handle” some told this Dad.  Those choice words – heart aching not warming. They sound more like  a “Buck up and Deal with it”.  Dealing with it could mean face torment each day,   but make sure you at least get to eat, sleep, and bathe. Look at the other stuff in life as the luxuries reserved only for those “fortunate” ones.

For me, the “fortunate” one. There ARE a few brown spots and prickers.  There are the meltdowns with screaming, banging, crying, and the question of how much longer weighs heavy. There is the school  report card indicating  “the below grade level” rating in many areas.   Her lack of certain social graces will probably result in many a stare. There’s the future worry that while all the other “normal” people her age are getting married, or developing a career, I wonder if there’s anything past the front door of our house.

Perhaps, I’ve not sobered up to the fact that I don’t know the real hardcore hardships of autism.  Perhaps we are raising Goldi in the honeymoon period. She’s safe, young, and surrounded with the supports and comforts of home and school.  There could be a dead end not too far away.

There could be a dead end but then again…. I’ve seen rainbows.

Last summer I saw a double rainbow splash into a neighbor’s driveway and make its surroundings glow. We stood with dropped jaw.

“It can’t be.” said a neighbor.

“Never seen anything so close.”  I said.

It wasn’t a rainbow we sought after. We didn’t have to chase it. It was literally at our fingertips. It was  blink once then twice – real.

I’ve chased. waited, and wished for rainbows. And then, when I suspect one is about to appear, just because the rain and sun had done just the right dance, I am immersed in an awe filled surprise. Just like hope and just like our Goldi.

I never thought to hope after Goldi was diagnosed,  only to cope and survive. The harsh words from an early speech path. screamed “She’ll  have autism for the rest of her life”  and shattered my hoping.  But each time Goldi wipes the sleep from her eyes, and lights up ready to live life to the fullest, I am reminded to look for rainbows. Some as small as finally tasting a carrot. Some as big as initiating a conversation with clear concise language. Some as beautiful as her singing a prayer to her Creator. Some as exciting as her reading and belly laughing at Frog and Toad.  I never hoped until Goldi reminded me to look for rainbows.

Golid, is the gift that God wanted us to handle … with care. In doing so there a rainbow of hope colorful and vibrant.  Autism Daddy, you can live on the Green Side.  Because of Love and with that – HOPE. Your child just like mine is a gift from God-  to show you hope in small ways and big. It starts each day your son wipes the sleep from his eyes and begins to step forward to begin his day. There may not be heart warming miracle to share on youtube and there certainly isn’t a cure. But  there’s hope as awesome as a rainbow because it comes from His Love.   Start looking for rainbows Autism Daddy. It’s most likely right at your fingertips.

I have forgotten what happiness is, My endurance has perished and so has my hope from the Lord. Remember my affliction and my wanderings, the wormwood and the gall,My soul continually remembers it and is bowed down within me, But this I call to mind, and therefore, I have hope. The steadfast love of the Lord never ceases, his mercies never come to and end. They are new every morning, great is your faithfulness. Lamentations 3:18-23

 

 

 

 

Her Namesake

I was a first time mom. Naming our  first child occupied my thoughts.  I was a teacher, and after 17 years, it seemed I knew every name in the book.  There were names permanently attached to certain personalities, that I so desperately wanted to avoid! Names that if given a dollar for every time I said them, I would be able to afford a condo in Florida. Names I couldn’t say without  thinking of the “stripper song”. Names that seemed to indicate some sort of Your Highness attachment or floppy -eared puppy dog. Names that if multiple syllables indicated genius or geek, and if one- jock, stud, or country boy.

After all the mind travelling through the many places we’ve lived, and people we have met,  my husband and I  went to our roots.  She’s named now. Has been for nearly eight years. Was her name a perfect fit? Did we name our Goldi right?

Her Namesake  came from her “GG”-  Great Grandma, who came from the exotic island of Cyprus. Most know little or nothing about it. She spoke five different languages fluently. She was 100% Armenian, a race very few know about.  They were massacred – well before the Jewish Holocaust. Those that survived quieted their horrible secrets, held their heads high, and moved forward taking on future challenge with grace.  She was a reminder that sometimes knowing this history is worth a little something.

One taste of her food, and you would know the meaning of art in cooking. She had all the particulars of fine etiquette, mastered. So much so, that she befriended many Big Wigs. Her never ending fussiness made everything a museum of cleanliness, order, and just right.

Golid’s GG has been long gone. A meeting here on this earth was not to be. But I wonder often of the “might have been scene” of  our  bouncy, messy haired, echolialia speaking eight year old Goldi and her GG .

I can almost hear her voice saying “She’s making me dizzy with all that jumping.”

I can see her sweeping up the crumbs of all that missed Goldi’s tongue.

But I can also smell her melt in your mouth breadsticks. Goldi would ask for more than one.

I can see Goldi twirling around as I did while her GG played nursery rhyme delighs on the piano.

Goldi will only know her Namesake through those that  carry her story and memories. At eight years old, we are still getting to know Goldi. Her GG has been Home for 12-13 years and I knew her for as long as remembering was possible. Did we name our Goldi right?

This  will always go here and that will always go there in Goldi ‘s world.  And with this Just Right demand, everything is a museum of play and invention.  Goldi has autism- the world learning about it may mean a little something.  She holds on to so many undiscovered secrets waiting to be told. But her hurts and frustrations of having autism are quieted right now. Instead she simply moves forward, lives, and learns.

She comes up with some new way to express a story or show the masterpiece within her. She has hobbled through relations with others but still tends to be the bright spot in their day.

It was to remember and honor my grandmother, that we gave Goldi her Namesake. If they met today, I know GG would be honored.  But even more than that, GG knew something that I hope Goldi will also one day. It is for His Name sake that we are who we are. It is for His name sake that we have our very being.  “For he leads me along the path of righteousness for His name sake. ” (Psalm 23)  Yes, we named her right!