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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

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Hoping for a Rainbow

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“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!

Goldi Gives Thanks

This Thanksgiving image is fixed in my holiday dream thoughts.  It’s those  images that we dream of when the holidays roll around hoping they come true.  Norman knew how to show goodness and happiness for the picture perfect world.

Thanksgiving Day, we made our way to grandmother’s house, ( over the river and all), I shushed my  two bickering kids  with a “You’re going to be thankful!” voice, and said,

“Goldi when you are sad, what makes you feel better?”

Goldi gave her brother one last smack, turned angelic and said “Well, . I just get my pink blanket and tell my mom.”

“Thank God for pink blankets and moms to help us feel better. ” I say.

“And you sir, ( referring to Goldi’s “Mom, she just smacked me!”Brother, If you are sad, what makes you happy?”

Silence. “Uh…..I can run as fast as a Cheetah away from the scary stuff.”

“Thank God for giving you fast legs.” I say.

I proceed with other  ridiculously simple  questions such  as “What is your favorite red  thing?”.  Anything I could  muster up for baby steps to a thankful heart.

This was my child  version of the “Thanks be to God” kind of stuff that we would recite during a Thanksgiving liturgy at church. Thanks be to God for putting the idea into my head at short notice. For the moment, we focused on a thankful heart.

Before we went up the hill and through the patch of woods to grandmother’s house ( really and truly) ,  I said “Let us pray.”

I thanked God  for things like pink blankets, and cheetah feet. And silently through my inner groanings, I asked God to fill both kids’ hearts with joy and gratitude.

Thanksgiving  at Grandmother’s house was very much  Norman Rockwell like picture. . The table was fancied up fancier than Martha Stewart’s.  We oohed and ahhhed over the bounty of food placed before us.   Family and friends were all there.

Suddenly someone with a ruptured spleen took my husband from smells of pure goodness to a stench in a cold OR. Suddenly,   Goldi grabbed her ear,  and I rushed home to get pain relief ,and missing the Thanksgiving prayer. Suddenly my son was asking for cereal,  after  barely tongue touching the home grown mashed potatoes, organically  and locally raised turkey, and out of this world cranberry relish.( never liked it until mom made us her version)

Then Goldi returned to the table proudly cleaned her plate. My husband returned in time to eat a plate of leftovers and help serve up the pumpkin pie. My son decided the green beans from the garden were really good. and licked his lips after a bite of pie. Thanks be to God.

We returned home and noticed Christmas lights already on display in the neighborhood.

“Oh, my goodness , will you look at that!” Goldi declared.

Not a second later,  we took off our coats, and Goldi said “Mom, we have to bake our cookies for Mrs. Claus, ( I will explain later) and….do you think she will bring me a Barbie House?”

Tired and ready to get down on my knees, I pray,  Lord, please help  Goldi ( and her brother)  to see, feel, and touch the gifts of God.  I pray,  that she will praise and glorify You not for just what You give, but for Who You are.

And with that prayer, in faith I look for Goldi’s grasp of the Giver of all things.

That night, Goldi pulls up the covers and closes her eyes, “Dear God, Thank you that we could have so much fun today. Thank you that we could go to Grandpa and Grandmas. And please help us to have a good favorite sleep. ”

I close my own eyes and do my own thanking. God gave as He always does on this day, and will forever more. Perhaps Goldi’s knew it. Simply because she knew Who to thank and what to thank Him for. To me, that is more than a Norman Rockwell picture.

Every good and perfect gift is from above. James 1:7

Knowing Norma New

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In my new Christmas Mouse Pajamas, I whispered  “Thank you Aunt Norma.”

She  wanted to give me a hug and  kiss on the cheek. A bright eyed three year old me was hesitant.

Aunt Norma’s kisses were sloppy. Her hugs were like a suffocating squeeze. Sometimes Aunt Norma closed her eyes in mid-sentence and wandered off into some kind of dream.  She rocked and rocked in a Lazy Boy Chair listening to the same “Jesus Loves Me”  music over and over. She wound yarn around a spool equipped for crafting something, but wound into hopeless nothing.

She was an image of old and young.  The “old” drank coffee and sat around talking about the routine things of life.  Some things said “young”.  She repeatedly wrote her name in uppercase letters on smooth notebook paper.  She would sit for hours looking at  family pictures, saying each name as though they were her first words. Crowned with gray,  she addressed my grandparents as “Daddy and Mommy.”  My Grandma hushed her so that we could pray just as my Mom hushed me.  This is how I knew Aunt Norma.

When I was grown, Grandma did some explaining: ” She was born with forceps. Back then, that was the way they did it when their was complication. Grandpa was so disappointed in the doctors. Had it not been for the way she was born, things might been different. She would have been ‘normal’. She would have had a real life. ”

On one of the saddest days of my Grandma’s life, Aunt Norma moved to a group home. She would be cared for by trained people, under the care of “The State”.  Aunt Norma was a forever guest in the white house with the picket fence. (literally that was Grandma’s house) . This was her life long “wrong”.  Her life was so much a story far away from mine.

Norma gained weight because of chocolate, cheeseburgers, and snitched second helpings. She needed help in the restroom. She needed help walking. She wore only clothes that promised comfort.  She couldn’t read past a few simple words of Dick and Jane. Her conversation was less than tennis volley.

But there was not a wrinkle on her skin.  Sometimes her spoken words sang. I asked her once “How old are you?” She answered with a “just a number” attitude. She was 62 at that time.  But according to Norma, she may have well been just brand new to the world.

Aunt Norma traveled many places like Disney World, and big cities. She knew the feeling of home sweet home with family around the dinner table. She knew the beauty of a perfect rose. She knew the heart the truth of “Jesus Loves Me” -beyond my too grown up mind, but not beyond the child minded Norma.

Grandma called her every night.  “I pray for you Mommy, ” Norma was the first to say. And every night Grandma said “I pray for you too.”  Aunt Norma knew the delightful secret. One that whispered, ” You are being made new.” Perhaps that made her smile and sing sweeter. During pains and trials, she knew the new and glorious that would someday be hers. She knew she was loved and she knew the Greatest of all Loves.  So there wasn’t a wrinkle on her skin or rarely a tear in her eye. “I’ll pray for you, Mommy.” she said.

This past fall, Aunt Norma left this world. It seems like its been as long as that Minnie Mouse Pajamas day,  since I’ve seen her.  My knowings of Aunt Norma still remain. But her story has now been spool knitted to mine. For, my knowings of her now walk alongside the picture reality of raising autistic Goldi.

One of the saddest days of my life was when Goldi was diagnosed. It’s been a “walking on egg shells life ” at times. It’s a life of questioning what might have been if only….It’s a life of sometimes straining to hear that delightful secret “Goldi is being made new.”

But then I remember Aunt Norma despite her life long trials, sitting in the Lazy Boy chair listening to Jesus Loves me. I hear her voice saying :  “I’ll pray for you.”  And my knowings of Aunt Norma are changing to the wonderment of knowing Norma New. That is now walking alongside the hope-filled days of raising Goldi. For every  wish of “might have been” on earth, is God’s firm and forever real plan of the Glorious New.

Mysteriously Masked

Cinderella and the Air Force Hot Dog  strolled out  on that misty evening in late October.  Kids seemed to come out of the cracks like ants to melted chocolate.  The streets were lined with people. We were one of those “must hit” neighborhoods.  This night was our first trick our treat.

Cinderella AKA , Golidi, freely floated in her “genuine article” dress towards any house that was well lit and familiar. Hot Dog Guy , donned with his father’s Air Force hat ( just to add some real man flair ) to his  pudgy stubby look, hobbled alongside. Both were attempting to make sense of the surrounding  topsy -turviness.

Goldi’s telescope eyes expressed wonderings sounded by her  Hot Dog brother. “Why did Mr. G have a spider web over his door? He always keeps his house and yard in tip top shape? What are those strange noises and steam coming from Mr. A’s house? Why are those pumpkins all lit up on Miss L’s steps? Is that Annie dressed up like a puppy dog? Why are their ghosts hanging from Miss M’s tree?

“This is what Halloween looks like.” I say.  “Halloween,”  I mutter softly, “the first of a series of sensory loaded holidays. Halloween-soon to string together with all the other holidays waiting their turn to raid our days until March when everything is a blur.”

For the moment, I focused on the present holiday sounding a bit like a Grinch. Is trick or treating going to be worth it? Dressing up for candy? Over half of which Goldi can’t eat thanks to her peanut allergy? Goldi likes to dress up.  I did it and had good neighborhood memories. It’s an experience. So on we go.

 We rounded our court and begin to brush shoulders with other princesses, fairies, football players, robots…. and then….a masked one. A green one with wrinkles and blood. Then another white one with black eyes that were like never ending holes.  That darn Scream painting!  I thought. ( You were thinking the movie eh?- the painting came first)

“No! I don’t like this.  ” Goldi says.

“It’s just a mask, ” I say calmly,  “They are pretending. Then they take off their mask, and it is just a boy or a girl.”

Goldi is not appeased. A shock paints her face ghost white.  Goldi is all about pretending but a mask  of any kind, hiding one’s true identity, puzzles her imagination and causes her to long for a safe reality.  Hiding behind a mask is not in her realm of any happy purpose and only leaves her with  a fearfully strange world.

“Let’s go home!” Goldi begs as she yanks my arm the opposite direction of anything sweet and dandy.

“Not yet Mom! cries my Hot Dog Guy .  His plea seems extra strong with Air Force plastered on his head.

“Let’s go get Dad. I will pass out candy at our house.” I told my son. ” Daddy can take you to more houses .” I say looking down at his sad little face.

Though my husband and I traded places, the fear of the mysterious mask continued to prison Goldi in fear as she huddled in a corner of the house where she wouldn’t have any glimpse of the “Stranger than Strange” constantly knocking and hollering at our door.

“No more! ” she cried. ” Tell them go home and take off their masks. ”

I hold her tightly and whisper “Mommy’s arms are real and Mommy’s love is real too. You’re safe. ”  But another mysterious mask appeared at the door and my words of comfort were overpowered with the once happy and innocent but now dreaded words of “Trick or Treat.”

“No! They have to go home.” she cried again.

How many more minutes until the neighborhood shuts down? How much more until normal returns? I wonder.  Normal is what Goldi needed for the freedom to be.  The world needed to be normal again- where everything was predictable and understandable.

For Goldi, there was  the pressing of the “Why?”behind the mask.  She learned to look others  in the eye, read their face, and be Goldi.  She longed for others to show their face as she does even in the midst of pretending. Unmasked but in costume was a safe pretending. A trying out of someone else but the reality of one’s true self still present.  In costume and unmasked, Goldi’s spirit and essence of who she is shines forth and is enjoyed. Put on a tutu and Goldi talently twirls.  Put on a princess dress and Goldi is the perfect tea party hostess. Put on some wings and hold a wand and she knows how to work magic.

Goldi enjoys and appreciates the spirit behind each known face. For the bottom line for Goldi – is …..Who would want to be anyone else but themselves? Who wouldn’t want to shine their own face?

For man looks at the outward appearance, but God looks at the heart. ( From 1 Samuel 16)

Suddenly Seven

Before it was ever August 18 2014, I was zipping across the rainforest in Costa Rica when suddenly…. I was married and rocking our Goldi to sleep listening to Kathy Lee Gifford lullabies.

With everything in its place and the house  was a palace of hospitality when suddenly, baby dribble drops splattered on the couch pillows and the baby swing or bouncy seat crowded out the oak piano with candles on pedestals.

Grunting and crying, shrieking, and pointing filled up Goldi’s talk.   We waited for the right time to vacuum the house. We said her name and she never responded.  We cut tags off every item of clothing and I winged it when washing them. We scratched our heads and sought to wait and see.  But suddenly, we were in a Pediatric Office and we heard the words “Autism “.

Suddenly the record player arm made  one hard scratch that stopped the beautiful , dreamy music of my life.   Suddenly every dream, goal, and picture perfect day was floating farther and farther away into the shadows.

Suddenly Goldi was starting school well before I ‘d planned. Suddenly, there were numerous professionals observing, studying, and testing our Goldi.  To me others would see Goldi not as our pride and joy , but as a label.

Autism in my mind, almost poisoned Goldi’s  very being.  No cure for autism.  Just a life sentence. Suddenly all that mattered is how to live each day.

It’s funny how Suddenly comes and goes. It enters in when you least expect it and often paints an entirely different picture. And its funny how when Suddenly enters in , we soon forget the world it left behind.

August 18, 2014 has passed. It is over a month later.  Goldi is  suddenly seven. I’ve leafed through pictures of those days of “suddens”, remembering the bumps, and the turns and twists of Goldi’s younger days.  Days when she lay in her bouncy seat and screamed as I vacuumed. Days when she just squeaked and nuzzled noses with her baby brother. Days when she ate nothing and drank only milk.   Suddenly, those days are gone and the “suddens “of days soon painted a different picture.

Suddenly, she  didn’t even plug her ears when I vacuumed the bedroom.  Suddenly she was shouting out to a neighbor “You there! What are you up to?” Suddenly she tried chicken sausage and actually asked for more. Suddenly she drew a tree house with fairies in it.  Suddenly she brushed her own teeth. Suddenly she did a show and tell in front of an entire class of kids.  Suddenly she played for hours with her toys. Suddenly she grew as tall as a lamp post. Suddenly she’s seven years old.

Suddenly Goldi will be 8,9, and 45 . Lord willing, I’ll see the day.  No matter how suddenly the years go by, there is certainty that the One who made her and brings about all the Suddens of life, is the same yesterday, today, and tomorrow. And the One who never changes, asks me to stand and watch and be amazed.  For I would not believe the miracles that will take place even if foretold.  Goldi is suddenly seven and I am suddenly dreaming again.