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Understanding Autism:

What I’ve heard, What I thought, and What really matters. 

I have been a mom of an autistic child for 14 years. Sometimes, when I have been asked for insight, I am guilty of getting up on my pedestal. After all, I taught in elementary school for 28 years, I worked with many autistic kids along the way, I am now raising an autistic child, and I have learned so much. Surely I know more than someone newer on the journey.

I know somethings. But yet, I’ve only just begun to learn. This is a lifelong journey. Just as learning is. I’ve really only started. This is just my understanding right now. It is what I’ve heard ,(for better or worse), what I thought, and decided what really matters.

What I heard about autism when Goldi was diagnosed………..

We sat in the pediatric doctor’s office wondering and worrying. This was the office of the “go to” doctor if your child showed signs of being on the spectrum. Wondering itself is enough. If you are just wondering, it can be like dreaming that the sky is really the limit. But it can be a deep bright blue sky, or gray one, or even a black one.  Worrying can sure taint the wondering.  

“Your daughter has autism. “ he told us. 

“Okay, “ I said in tears, “Is there a chance she could be another Temple Grandin? “

At the time, she was the hope of anyone who had autism. She was the model of what your life could be despite autism. Temple Grandin was the one I knew of that did something with herself and did is successfully.

“Oh! I am sure she’ll be successful. Maybe more so than Temple Grandin herself, “ answered the doctor.

            “Wonderful! She may have a chance at her PHD and go all around the country speaking about the cause or sharing her expertise with passion. Maybe her autism is to her advantage in that way. Maybe…..”

But maybe Goldi wouldn’t be another Temple Grandin. Did we want another Temple Grandin when we have a Goldi? What really matters is that Goldi is Goldi for a reason. Just like Temple Grandin is who she is for a reason. And at that moment, what mattered was we had an answer to our wonderings about all the quirks and crookedness of our lives thus far. And it was up to us to move forward and begin to dream. 

What I heard about autism from an experienced teacher

The bell rang to close the day. I meandered around classroom to tear down the day’s show and set up for the next. Sometimes teaching kindergarten felt that way.  You set the day’s stage for what you hoped would provide the best learning environment possible. Then the kids came and experienced what you had hoped would be the best learning possible. I performed and my kid audience applauded, booed, and certainly sent their reviews. ( as did the parents)  Finally, you clean up all the mess that comes with kindergarten learning , making sure everything is in its place, fresh, and ready for the next day. Joey needed his laminated visual chart wiped off. Nina needed her morning assignment all set up on her desk. The leveled books needed to be switched out.  

            “So, I think Betty has autism. “ says a voice. 

Another teacher has walked in my room. This is the start of her vent. 

“Are you sure? “ I ask. 

She totally has sensory needs. She has no eye contact. I know it’s autism. “

I know all about autism and I know if a student has it. I know exactly what to do.”

             To know everything about autism and know exactly what to do about it is an absolute impossibility. I wish I had that gift. At that time, I had been a parent of an autistic child for about 10 years and I still didn’t know everything. Nor do I know think that I will ever know. 

“It’s good you do know. That will help.” I said after pressing my lips together to reserve my true feelings.

What really mattered to me at that moment, was realizing how little we know about autism and yet how much we claim we really know, almost to the point of thinking of ourselves as an expert.  If there is one thing that I’ve learned now, is that autism is not a label for just anyone, and it is not the “go to” conclusion when there is no other answer. The real expert on autism is perhaps the one with autism.  

What I heard about autism from another parent

I was folding laundry, and I heard it said on a podcast. It wasn’t the first time. But it keeps being said. It is said by those who know and admit, that they are not experts. And to me, that IS what makes someone an expert. 

“You have met one child with autism, then you have met one child with autism. “ said one mom. 

 We need to let those words sink in. There may be social, sensory, and language challenges that autistic persons share. But what makes one laugh or smile, makes another cry. Some feel rested and refreshed with calming music. But some need absolute silence.  We need to get to know, help, and most importantly LOVE the autistic one in our lives. We need to enjoy them. Find out what makes them shine. Nothing else matters.  

What I heard about autism from Goldi,

I saw the school custodian wear a blue shirt with the letters for autism spelled out.  Each letter stood for something. Always Unique ,  Totally Interesting,   Sometimes Mysterious it said. 

Some wore these shirts during Autism Awareness week.  I thought those words were the best I had seen in print.

“What is does it mean to be autistic?” I asked Goldi. 

“I have no idea, but I love you mom,” said Goldi. 

What mattered at that moment was not that she knew how to define autism. That shirt didn’t define it either. What mattered to her, was that she was unique, interesting, and even mysterious. She was going to live life knowing this. Most of all she was going to live it with love. That is what she did then, does now, and still does.

What I heard about autism from the One who made ALL those who are autistic 

It is easy to picture Moses with his long flowing beard calling out boldly and forthright, “Pharoah! The Lord says : ‘Let my people go!”  

But I forget, Moses stuttered. He stuttered big time. Enough so that he was insecure and felt not up to the task that God called him to do. So as soon as God asked Moses to lead the Israelites into freedom, he said: “I can’t talk well. Send someone else. “ 

But Then the Lord said to them, 

“Who has made man’s mouth? Who has made him mute, or deaf, or seeing, or blind? Is it not I, the Lord?” Exodus 4:11

I know these words don’t directly speak about autism. But they might as well. They could include any disability, special need, or limitation, and we could offer any excuse in the book for NOT being able to do what we are needing to do. 

There is nothing to say to that except, 

“Yes, Lord. It is you that made it this way.” 

What matters is that there is a God, the Creator. I am not him. 

So autism or not, God made created Goldi to do something and maybe He allowed her to have autism for that very reason . Nick Vujicic has no limbs.  He does have a pair of shoes in his closet just in case. Why doesn’t he just give them away to someone who actually has feet? Because his hope is welled up inside of him. A hope that believes that one day, if God willed it, he really could walk. A hope that believes that even if he didn’t in this life, then the shoes are a reminder that one day he will not just walk but dance. He will wave hello and raise His arms in praise of the One who allowed him to have no limbs on earth. Where did he get this hope? He got it from reading about hope in the Word. Words like these: 

John 9:1-3 And As he passed by , the saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind? Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. ”

Nick is limbless. Goldi has autism. Sin is evident. We have all sinned. We all fall short. It is easy to just blame it all on sin and figure we are doomed. But that is not what Jesus does. His reminder is that God is greater than this sin that leads to death. God is on display in Nick, Goldi, and all of us other sinners. Sometimes it seems like we see God only in those who show greatness. It is easy to see greatness in those that are successful, popular, or those who did something BIG. But this reminds me that we need to look where the world does not look- in the “least of these” . For there, just as Christ says, God is displayed. And sometimes, there, we come to know that He is more great and amazing, than we had ever comprehended.

This is what I understand now. This is what I carry with me along this journey. Knowing that I only know something and still have much to learn. More people will say voice their expertise. There is more to think about. But as I’ve heard someone say, “God only knows all, and in the end that’s the only thing that matters.”

All in the Story

I bring everything but the kitchen sink. It takes time to pack it all. A small purple sparkled barbie shoe, a straw, a cup of water, a soft blanket, , a cinnamon stick, a battery operated light, and other things are buried in the bags I have hauled inside the classroom.

“She’s here!’ says Mrs. White, “Say hello to the Story Lady.”

A girl wearing brown wind combed hair claps her hands and vocalizes her strong alto voice. It sounds like a combination of a musical scale and crying. But there are no tears and she waves at me and smiles.

“Hello,” she taps on her talking tablet. The girl’s name is Polly.

A curly red haired boy stomps his feet and nudges closer and closer to me. He wants to explore the contents of my bags. That’s Danny.

“Sit.” says Mrs. White pressing him down on the shoulders gently with her palms. “You will see what she has to show you.”

Another boy just sit there as though nothing has happened. His eyes are either glazed over. he is somewhat scrunched up in a wheel chair. He makes no sound. His name is Ian.

A boy sits in a chair and slides a small pom pom back and forth on the table. His name is Ned.

“We will have to put that away now,” instructs one of the paraprofessionals. “It is time for a story.”

As she snatches it away, he whines a little and grabs at the air.

“You will get it back soon. It’s okay.” she assures.

I quickly unpack the “treasures” of my first story hiding it on a small table that fits just underneath the larger table that the kids are sitting all around.

“Once upon a time,” I begin looking at each of them in the eye. “There were 3 Little Pigs.”

I hold up a small plastic big and give them the biggest “oink” that I can muster.

Goldie once held this same pig up when she was about 4. She gave it to her brother and said “This is Pig. What it says?”

“Oink!” answered her brother in HIS biggest pig voice. Goldie let out a belly laugh. Her brother did too. Then she held up the next animal from her large pile.

Polly sings her scales again. Ian does nothing.

I let out an oink three times. I bring the pig close to their eyes so that they can see it.

“PIG! PIG!” shouts Ned.

Danny reaches out to take it from my hand. I lay it in his hand. He closes it up tightly and scurries away like he’s just been given gold.

“Danny! She will need that for the story!” cries Mrs. White.

She props it out of his hand and slips it on my hidden table.

“The first little pig, built his house of straw,” I continue.

I show them a bunch of straw. It came from an scarecrow Goldi made when she was at the community fair.

“Too scratchy!” she says.

But we made one anyway with an orange hat and googley eyes.

I rub the straw on Ian’s face-

“he made his house of straw!”

Ian jerks and giggles. It is the first time I have ever seen him react.

Both Mrs. White and the paraprofessionals laugh.

‘As soon as the first pig was finished building his house, along came the BIG BAD WOLF.”

Out comes a wolf puppet. It has sharp teeth hanging out and a big long nose. Wolf was a gift to Goldi from her uncle. It actually went with the Granny and Red Riding Hood. Goldie knew that story well and often acted it out. Goldi put Wolf on her bed with all of her other stuffed animals. Although he was all alone with no one beside him.

Danny of course wants to pet it. Polly sings her scales. Ian is too stunned to do or say anything if he could. Ned simply cries “NO!”

“Little Pig, Little Pig, Let me come in!” I say in my best scratchy husky like voice, making the wolf’s head bob up and down.

“Not by the hair of my chinny chin chin,” I say in a high pitched voice.

As I say these words, I lightly caress each of their chins. Amazingly each one smiles and giggles. Even Ian.

“Then, I’ll huff, and puff and blow your house down!” I make the wolf say.

I take out my straw and get out of my chair. I walk right up to Polly and blow on her through the straw. My breath brushes across her forehead and strands of hair fly out of her eyes. Polly raises her eyebrows and smiles. I do the same to all the rest. Danny begins a giggle that won’t stop. Ned imitates my blowing. Ian giggles and smiles. He seems to have come to life.

Goldi once blew bubbles with a straw and a mixture of soap and a lot of glycerin. She blew a bubble as big as a plate. She laughed and laughed. She kept that bubble there with her own strong breath.

‘When the third little pig heard that the wolf would climb up the chimney, he quickly built a fire. It was very hot!”

I show them some sticks and a battery operated candle and set it in front of them.

“It was very hot!” I say again shaking a maraca to make it sound like a sizzle.

No one reaches out to touch it.

Goldi, her brother and I, would sometimes light a real candle and roast marshmallows on it. We called it our own little campfire in the house.

“The third little pig put a pot of water on the fire to boil. ”

I show a small bowl of water. They simply look at it unimpressed.

“The wolf slid down the chimney and SPLASH!”

As I say the word, I dip my hand into the cup and aim toward Polly. She jerks and leans to dip her hands in the water. All of them receive a little splash of water on their cheek or hand.

“SPLASH!” says Ned.

“SPLASH!” says Danny.

Ian points to his hand. He grunts a little insisting on having the wet drips wiped off.

“Oh! You are okay!” says the parapro.

For a long time, SPLASH seemed to have been Goldi’s favorite word. She wanted to splash in puddles, small pools, the bathtub, and even a bucket of water.

“And that was the end of the BIG Bad Wolf. And the 3rd little Pig lived happily ever after. “

I clap my hands. They all clap their hands.

I take a breath and pack up all of my treasures. This was only the first story. I have to move fast. I have three others to tell and so many other props to unpack. There’s the purple glass Barbie shoe for the class slipper to show when the fairy godmother puts them on Cinderella’s feet. Goldi lost the other shoe and knows that Barbie needs a two shoes to make a pair. She learned that when she finally had a voice for Barbie and just the right dress for her for the party. There’s a stick of cinnamon for when the old lady smells the scent of her delicious cookie baking in the oven. Goldi knows that smell well. It is the smell of her favorite cookie baking. There’s a soft blanket for feeling for Goldilocks falls asleep in her just right bed. It’s made from some leftover fabric Goldi used to make a rag doll.

These little things seem unimportant. Yet, they make up the memories of raising and teaching Goldi and they are now all in the stories I tell to these “Goldis” who struggle more severely with autism. They too have stories. For now, they are hidden. They need to be told stories. Stories of happy endings, magic, wonder, and even plain old everyday somethings. For a few moments, in this classroom of severely autistic kids, these stories are all there is. And I need them to be ALL IN as I tell them. Then, those stories can be a part of them ever after.

An Unplanned Anniversary

Goldi is all dressed. Her lunch is packed. Her hair is combed.

“It’s a snow day!” I tell her.

“Oh,” she says softly, looking down.

“Are you sad?”

“Well, ” she sighs, “I guess we will go to school tomorrow?”

“Probably,” I answer.

“But today, we will do the same thing I did 43 years ago. ”

I look at the faces of both Goldi and her brother. He enters with his eyes squinting.

Their faces are still coming alive at 6:30 am.

“You mean when you were about nine?” asked Goldi’s brother. Just one wiping away of sleep from his eyes, and he is a walking calculator.

“You’re right.” I answer.

I have no idea but I trust his math over mine any day.

I had whipped up French Toast and waffles. We have time to bite, chew, and swallow. So, the three of us sit down to feast and I begin a story –

“It was 1978. The flakes weren’t dancing and floating around pleasantly so we could see their special beauty. They were instead rushing down like it was the grand finale of snowfalls. The wind howled loud enough to rattle the glass of my window. I was afraid to even get out of bed. The brown house across the street, our mailbox, and the street lamp, were all erased with white. “

“You couldn’t see anything?” my son asks.

“No. Just white. ”

Goldi’s eyes get big.

“We didn’t even have breakfast. We just got all bundled up and went out exploring. It took all of our arms at once to push the door outside open. It took all the strength we could muster up to even move an inch in the snow. One step and you were nearly buried in cold. It was only when I saw the neighbor’s American Flag , that I knew where I was. Soon, we were standing on the roof of our house! The wind had just kept whooshing the snow into such a mountain, we had the perfect hill. We flew down on sleds right into the street. The world was a playground and nothing more. “

Do you think we got out our computers? “

They shake their heads.

“How about our video games or tablets?”

They shrug their shoulders.

“No, mom. ” my son says in a tone saying “you always remind us things were so different then.”

” We had a rotary phone on the wall and a black and white television. For two weeks, we stayed home. For two weeks we had to fill our days with things of home. The roads were not plowed. No one was going anywhere.

After making two mountains of snow on both sides of our driveway, the neighborhood fathers, took sleds, and walked to the grocery store about 5 miles away. I thought we would never see them again. But we needed milk, eggs, and bread. We needed to eat. So they went.

We could do all sorts of things that we wanted to do, and only a few things we had to do. Sledding, snowman building, hot chocolate, filled our days like it was a happily ever after dream.

But after awhile, it seemed like the normal things we once did, like going to school, going to the grocery store, a walk down the street, going to church, even going on any sort of outing, was all like a dream too. It seemed like the wait for normal would never end.

It’s our first snow day this year. Life will be probably be “normal” tomorrow. In the meantime, you CAN do a lot of something elses instead. “

The kids both nod their heads. They know as well as I , that normal these days seems out the window even without a snow day.

Goldi begins to cover herself from head to toe with winter clothes. Her brother soon follows.

“Where are you going?” I ask.

“Outside!” they both say in unison.

I watch them from the window. Each have a shovel. One of them falls down on purpose and just lays there looking up. One holds their hand out to catch a snowflake and hold it close for a few seconds.

It is the perfect something else to be doing, just like it was 43 years ago.

And we know that for those who love God all things work together for good, for those who are called according to his purpose. Romans 8:28

Whatever you do, do it all to the glory of God. 1 Corinthians 10:31.


Two weeks ago, Once upon a time….

“Mom, I have to tell you something,” says Goldi crunching her favorite graham cracker cereal.

A story is coming. I ready myself by opening my ears even though I am waiting for the water to boil for my morning cup of tea.

“Ok. I’m listening,” I say looking at her eyes that I look as though they have wandered all around the world.

“Well, Annie told me that Mr. Brown went water skiing on Lake Michigan. He did some flips!”

“Really?”

My eyebrows are raised. I can’t picture her very serious and sensible history teacher on water skis and certainly not doing flips!

“How does Annie know this?”

Suddenly I sound like a detective.

“Annie said that Mr. Brown told her class.”

“Really, Mr. Brown did?”

“Yes! Mom! Mr. Brown said that he went water skiing on Lake Michigan!”

I squint and try to picture this man wearing a bright orange life jacket on two skis sliding across the lake behind a boat bouncing on the waves. The image is fuzzy and is tainted by my cemented notions.

“So when did he go skiing then?”

“Probably about two weeks ago!” Goldi insists.

Two weeks ago it was 30 something degrees.

I sigh.

“That’s impossible!” interjects her brother who is also sitting at the table munching.

Logic and reason and all things realistic are what makes any story valid enough to tell according to her brother.

“He probably went water skiing this past summer. ” I conclude.

“Well, ” she says looking out into the distance. “Yeah, well, probably,” she says still uncertain, “I can’t believe he did that! That is so crazy!”

Goldi laughs heartily.

I envision Mr. Brown a little more clearly. He is smiling wide as he “sticks” his landing after doing a double flip.

“Wow!” I said. “That is really something!” I said smiling big.

“Yeah!” said Goldi smiling and giggling.

“Mom!” her brother’s whisper blasts into my ear drum. “Mr. Brown did not go water skiing two weeks ago! Why does she always say things happened two weeks ago?”

Every story that Goldi has told happened two weeks ago. I don’t know why. It’s her way of saying “Once upon a time.” It happened. She just doesn’t know when. Nor does she really care. It’s a story that is worth telling. When she is sleeping, remembering, and dreaming, all those stories are racing around in her mind. The one that captures her attention will be told at a time when Goldi suddenly feels it is the right time to tell it.

Once upon a time has begun so many stories that have been a part of her life. It begins the story of Cinderella before she married the prince. It begins Goldilocks and the Three Bears before Goldilocks fell asleep in baby bear’s bed. It begins the story of The Elves and the Shoemaker before the elves appear and worked their magic. Once upon a time starts all those stories that says it happened. Maybe it happened in the dream world. Maybe it happened in the real world. Maybe it happened in a little bit of both worlds. Two weeks ago and once upon a time, is enough. What’s next is what counts. And so the story is told and the only thing that really matters is that it is not when it happened in her wildest dreams or in real life, but that it becomes a story that became part of her. So it is worth telling and remembering and keeping.

Goldi is keeping many stories I have yet to know. There may be a time when she will tell them. What she may recall over this past year 2020! What she may not! Nonetheless, what she has remembered, dreamed, and kept, happened not just in a time that has now passed, but in a time two weeks ago and once upon a time, there are stories that she has remembered for a reason.

Sometimes it is frustrating that her awareness of time does not go beyond day and night or when she was younger and now she is older. Something from the past is just as real as if it has just happened. I sigh because in her mind, time is so irrelevant.

But then, I smile. I smile because time IS so irrelevant to her. Two weeks ago, and once upon a time, someone began a story. The One who always was. He said “Let there be Light and it seems it doesn’t matter exactly when, but what matters most is that that Light appeared and it still is here. It happened long ago, and it is happening now. This is a story that never ends. Time cannot put this story in its place and it will exist beyond time. For it will always will be two weeks, once upon a time, and for all eternity.

“In the beginning, God” Genesis 1:1

“In the beginning was the Word” John 1

2 Peter 3:3 For with the Lord, one day is as thousand years, and thousand years as one day.

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

N

Covid Cornucopia

The day after Halloween, the wind undressed the trees and now they have gone to sleep. I can hear the new wind in the distance as only a whisper now but soon it will sure to shout out its arrival with white crystal confetti and a roar or two.

“Aren’t we going to put the cornucopia on the table now?” Goldi asked the next morning.

Still recovering from the fast moving time warp we all find ourselves in, I stood in a daze.

“The cornucopia?” said looking at her with scrunched eyebrows.

“You know, the big horn basket thing we put on the table. Then at our dinner we write on a colored slip of paper something we are thankful for. Then we read it and put it in the cornucopia and THEN on Thanksgiving Day we make a big long chain! Remember?”

“How did I not remember? It’s November. Even though it seems like it was just the fourth of July. ”

How could I forget? It’s been our tradition since we moved to our new house. Not only that, it is a Geek thing. It’s a Roman thing too, but it’s the Greek part that is important. No one ever said “This is your grandfather’s cornucopia , I want you to have it to remember him by. ” It comes from Greek mythology and some story that actually seems ridiculous to me. I like to focus on its symbol. It has been called the “horn of plenty” for its curved shape. It represents abundance. Later in Early America, around Thanksgiving time , it was basket filled with fruits and vegetables from the harvest.

I had cleaned ours up a bit and spray painted it a golden color. Stuffed with fake poinsettias, I found it among the Christmas decorations. ( Alas, one season at a time please) The dried up roses from the yard were removed. The cornucopia was laid in place. It seemed so much bigger than I remembered. I wondered if it would really look full on Thanksgiving Day.

Goldi chose the color red to start. She laid out four strips of red paper and a pen at each place setting.

“What’s this? someone who shall be nameless asked.

“We are starting the cornucopia!” Goldi states as though frustrated that everyone seemed clueless.

I am thankful for this sunny day. I wrote.

I am thankful for steak! said her brother.

I am thankful for this house. said my husband.

I am thankful for friends, family, food, and mashed potatoes! said Goldi.

Four red strips were rolled up and put inside the cornucopia.

As the sunset, I began to get chilled. I hoped the sun would shine the next day, and the next day after that and for all the days ahead. But not even knowing what tomorrow ever brings, I got out the electric blanket for bedtime.

“Will we do the cornucopia again tomorrow?” Goldi asked as I tucked her in.

“Of course!” I said closing her bedroom door slow enough to see the twinkling smile on her face.

Tomorrow started with more chills. Ten layers of blankets with one being electric and I was chilled. The sun was going to shine , was to be nearly 70 degrees ,and I was chilled.

“Do you know where the thermometer is?” I asked my husband.

In typical nurse fashion, he had dug out our thermometer, cleaned it off with alcohol, and handed it to me ready. He took my heart rate too.

“What do you think?” he asked showing me the high number.

“I think I have it. ” I said feeling the thud of the realization heavy on my chest.

I spent the entire day in bed. My husband stayed home from the hospital. Kids stayed home from school. I slept and sometimes just laying there thinking –what does the world look like outside the bedroom door?

Dinnertime came and I was alone. I heard plates and silverware clanging.

Golid came in

“Mom, here- ” she said with her head turned away .

She had laid out a green strip of paper and pen on the table next to me, then quickly stepped away.

“You have to do the cornucopia. We did it too. ” she informed.

I am thankful for warm bed. I wrote.

“I will put it inside the cornucopia!” Goldi said speeding away .

Testing once seemed no big deal. Goldi and I had tested in the summer. Mostly a precautionary thing. It didn’t seem so bad. We’ve all stuck things up our nose before.

“What is your name and birthdate” said the PPE covered girl.

What was my name and birthdate? Things seemed so blurry right then. I sat there scrunched in my seat looking more like my kids before getting their vaccinations.

“It’s going to be uncomfortable. But just relax . Four seconds in each side. “

“Okay.” I said

It was over quicker than the wait on the phone to talk to the doctor. It was over quicker than waiting in the line even with an appointment. It was over quicker than it took me to remember my name and birthday. But I was crying.

“Kids,” I said with a cracked voice, “You are braver than me. You got all those shots and didn’t cry a bit. ”

“Here mom. ” said Goldi handing me a yellow strip and a pen before dinner.

I am thankful for my family. I wrote.

“How do you feel? ” Goldi asked as she stepped away .

“Okay. ”

“Well, I ‘m sure you will feel better soon. ” she said.

Sleep was pretty easy to do after such a day. I didn’t want to get out of bed for one minute. Soon, I grew thirsty.

The moon’s glow lit up the kitchen. As I filled by cup with water, I could see the cornucopia looking fuller. Goldi had certainly seen to it that we carry on the tradition. Only three days into the month and it didn’t look so empty anymore.

Pink strips of paper were set out for dinner two days later. A couple of hours before, I read my results. I read them twice. I was positive that I was positive. I sat several feet away from my family, feeling very little appetite, and like I was about to eat invisible food.

I am thankful for the fruit jelly. Brother wrote.

I am thankful I could wear shorts today. Goldi wrote.

I am thankful that we are all home together. My husband wrote.

I am thankful that I am positive, I began, that this cornucopia is going to be the fullest ever. ”

2 Corinthians 9:8 And God is able to bless you abundantly , to that in all things, at all times, having all that you need, you will abound in every good work!

A Just Right Girl

Never did I think that my first published story would be about a girl with autism or that the girl would be my own. But Goldi is ours. She is this outstretched armed, wind combed, stand smiling in the rippling waves, girl whose mind is full of wonder and whose heart is full of love. Goldiella is a story that had to be told.

Though I didn’t imagine I would tell such a story 44 years ago, when I lay on my pink fluffy rug , writing pages and pages of stories about talking toys while locked in my room. I was out of sight for hours. There, the ideas poured out of me like the falls at Niagra. My stories would be in books for children who would check them out of the library, buy them from the bookstore, and even order them from the book clubs. I knew story after story that children needed to read and know and hold onto forever. I didn’t expect it to be the story of Goldiella.

But life lived brought growing up, teaching and working with kids, then later marriage and two children of our own. One was a daughter with autism. With that came unexpected stories that poured out like the falls at Niagra. Certainly not the kind of made up story of talking toys in a wonderful fantasy world of happy go lucky days. But real life stories of setback, hardship, sadness, and most of all something more amazing than we could have imagined. Goldiella is a story of our just right girl. Just right not just because she has autism.

Goldi is also a dreamer. She dreams of being happily ever after for real. She believes dreams will come true despite this mysterious thing called autism that could have, even should have, kept her from dreaming in the first place.

In many ways it is many stories. It does tell the about the life of someone who has autism. But it also tells the story of the lives of people who know her and live life with her. It is the story of growing up. Most of all it is the story of the amazing thing that can happen, in the life of one who falls short of being normal, because of Someone so amazing because He is more than normal He is awesome!

Goldiella is being sold on amazon and is there for those who want to know more about autism. It is for those who wish to find themselves in a story, no matter where they are in life. It is a story that when finished reading you might find yourself in a just right place to begin dreaming a happily ever after dream.

Quiet the Questioning

The phone beeped, buzzed, and rang all within a few minutes. These interruptions snatched me from a dream I had been caught in, promising to keep me engaged in another intriguing world until the sun was shining bright enough to end it. It was the Friday after parent teacher conferences, the middle of March, and two weeks before spring break. There was two and a half months left of school. It was the last year of our son’s elementary years. Spring was just around the corner. But all of these things were in the shadows . What marked that moment was a heavy, pressing question: What does all this mean? It lead to an endless series of questions.

The immediate answer for me was a cup of tea. One sip of hot chamomile was calming and soothing. But then, questions blew in like a gust of wind and caused me to shiver.

“What was that sound? What happened? What’s going on? ” Goldi, asked with the bright eyes she always wears when she is excited or extremely curious.

I took one more sip to wet my still dry and tired pallet to help make my answer sound clear and confident:

“School is closed because of the coronavirus.”

Holding my mug of tea and still wearing my pj’s, I had hoped those words seemed more like words of everyday news like there is slight chance of rain today or dad forget his lunch. No big deal. But my answer invited more questions from the wide open floodgates.

“Are we going to get the virus? How long will school be closed? Why does school have to be closed? Will I still have to hand in my homework? What are we going to do today?” Both Goldi and her brother didn’t seem to be breathing . It was simply hopeless to attempt to “step over their words” with attempts to silence and satisfy.

Soon, the subject was left hanging. We carried on with the usual things as though nothing had happened. Goldi dressed in her outfit she had planned to wear that day to school, combed her hair, brushed her teeth, and began talking in various accents in her room as she played with different dolls and figurines. Her brother got lost in checking scores and stats for the upcoming NBA championship. ( thinking all games would still take place) I found a pencil and a piece of notebook paper. I wiggled the pencil back and forth thinking and scratching out a plan.

By the end of the first week, we had established a routine and it was set it stone enough for the kids to begin to argue it:

“Why do we have to do math at 9:30 am? Can’t we just skip reading today? Could we watch a movie while we eat lunch and have a longer recess? ”

After three months, the questions were few and far between and nearly back to the normal inquiries kids ask ” What’s for dinner? Who touched my tablet? Can you please tell her/him to stop bothering me! Can we get Disney Plus? Can you help me find some socks?”

Under lockdown, our routine was in automatic mode. It was almost like we turned into robots going through the motions of our day without any emotion and on never ending repeat cycle. It was hard. It was tiring. It was sometimes complete drudgery.

Then, summer came and we grew pleasantly lazy and care free. The green grass, the blue sky, the warmth of the sun, all color our days with an easy breezy feeling. Despite the looming danger of the virus hovering over life, the questions have turned to wonders:

“What makes the sky so blue? Why does the hummingbird flap its wings so fast? What makes the firefly light up? How many shapes can a white fluffy cloud make? How do you tell if the watermelon is ripe? I wonder how fast I can run from the mailbox to the end of the street and back? Is there a dandelion I can pick and make a wish on? “

Wonderings on summer lazy days are a perfect respite from the agonizing questions with only unknown as the answer: How long will we have to wear a mask? How long until the virus is over? Will I get the virus? “

We still live in summer and are still living in this wonderful dreamy respite. There are moments that feel so normal and we forget that a virus indeed did hit and that there is still so much unknown. How pleasant it is to put that in the shadows and just live and be. But then there are moments when through one word from someone, a story, or a bit of news, buzzes in our ear like a mosquito.

“When IS this virus going to be over anyway? Are we going back to school? Will they have choir and cross country? Will I have to wear a mask all day? “

These questions are asked before spooning a bite of cereal into their mouths or right before they fly out the door. There is less panic in their tone and maybe a little bit of patience. Even when the answer is “I don’t know ” Miraculously , Goldi will shrug her shoulders and say “Oh.” Both Goldi and her brother have endured this. They have no clue as to how much longer we will worry about the virus. There is no vaccine, no cure, no promising medications, and no true rock solid facts. But Goldi flies around on her scooter, practices various accents, imagines, creates, and lays in her hammock looking up into the sky in perfect stillness. Her brother flies around on his rip stick, flips on the trampoline, pesters his sister, and slows down a little to wipe the sweat off his forehead. They have shown that even though the unknown is a constant, they aim to be a kid.

As the summer waves goodbye, and school speaks of reopening, I have asked questions to them as I worry through the laundry list of questions of my own:

“Do you feel okay? Do you want to go back to school? How do you feel about going back to school? How would you feel about school at home?

“I feel fine! I want to go back to school!” shouts Goldi’s brother.

“I think I should try to go back. ” says Goldi looking off into the distance as if she had a peek into what “going back” would look like.

They are determined to experience even the slightest trace of what was, holding on to those “good old days” with all their might. They dream about it and wish for their return.

We still have questions that float around in our heads. But they don’t blurt out as rapidly as before. After they are verbalized, even if the answers are not what they would like, we all respond with a sigh, and move forward with even a small thing like licking a popsicle, twisting a rubrics cube, or just walking around breathing in the summer air. As we all do these things, a dream of “someday soon” stirs up inside us. There is a peace and a comfort because Someone else has all the answers. Someone has wisdom beyond us. Someone is able to quiet our worries, our cares, and our endless questions with His love.

His understanding is unsearchable. Isaih 40:28

He will quiet you by his love. Zephaniah 3:17

Not normal but new

Summer’s sentimental  air lends itself to reflection. The sun’s warmth is a sweet compliment to memory building days of swimming in pools, bike rides,ice cream cones, and never ending play. Summer gives way to school, and is nearly over for Goldi. So I’ve looked into a mirror of days past, and wandered into the “what will be”.

In the sparkling waters of a swimming pool, Goldi held her breath and let the wavy water blanket her. She kicked and floated and blew bubbles.

“I saw the bottom, it’s blue!” she said popping up to the top.

Hesitation no longer crippled her. The ripples of her splash stretched as far as the pool’s width and the waves took a long while to calm.

She’s older now and those her age have aged more. They know that pink and orange clash. They are playing with their rip sticks and not their princesses. Will she be as free to make her own splash? How will she deal with the poison of some bully or one who turns up their nose at her quirkiness?

“Mom! Watch me again. I am going to be underwater the whole way!” Goldi announces.

I watch with anticipation. Goldi swims the whole length of the pool underwater.

There is a new trail that winds itself through the quiet of the woods. A hush allows us to hear the sizzle of the tires on wisps of dirt. It allows for Goldi to stretch out her hand and brush the low branches of leaves as she breezes by.

“Goldi lead the way this time!” her dad invites.

Goldi takes first place. She looks from right to left at the first cross street. She waits and double looks.

“All clear! Let’s go!” She calls out.

Sometimes, her peers instruct like a momma. They stoop down and use their little kid voice:
“It’s your turn. You have to do it like this. Be careful. ”

Will she know to pause and think on her own before she acts?

Goldi pedals onward and comes to the next crosswalk.
“Go ahead!” her father says.
“Not yet Dad,” she says back.
A car storms through unexpectedly.

Laziness is at its best while licking ice cream cone on the front porch. In the shade and in everyday view of summer, we lick, question, talk, and listen to the breeze. We wait for the hummingbird to surprise us. Sometimes he comes and sometimes he is elsewhere. We are content no matter.

“Mom, this time I want a mint chocolate chip ice cream cone”. Goldi requests.
My scooper shakes with excitement.

“You mean you don’t want vanilla?” I confirm.

“Nope! I want mint chocolate chip please.” She insists.

The humming bird comes right to the kitchen window and nods.
I become more than content. I am elated.

Summer eating has turned feasting. New on Goldi’s menu is hamburgers, cheeseburgers, roast beef, grilled cheese, smoothies, spaghetti with sauce, and mint chocolate chip ice cream.
Will she know the pleasures of the new? Will she take the risk of trying even though uncertain? So much new ahead as adolescence rounds the corner and Goldi stays in the wing of little girl.

“I’ll help cook dinner.” Goldi announces wearing her pink apron.
“We need to peel some carrots and crack some eggs.” I tell her.

Goldi glides the peeler with ease and allows the slippery ooze to tickle her fingers. New has never felt so wonderful for her.

When the neighborhood wakes up, Goldi dashes off to knock on doors.
She approaches even the big tall, booming voice fathers and asks: “Is she home? Can she play?”

Even in the disappointment of decline, she realizes there is a second chance. There is a hope stemmed from forever play days passed.

But my poison is worry. Worry is a like a sword, piercing my hope with future rejection from these same playable neighbors and others sure to meet her autism. Will she initiate friendship? Will she find those that genuinely cherish her friendship? Will their discipline, poise, and maturity drift them far apart from Goldi’s childlike manner, naivety, and innocence?

“Mom, they can ‘t play right now. Maribelle has karate and Jane and Suzie are in the middle of a checkers game. ” Goldi says softly.

Right now passes quickly and there are three knocking at the door.
Right now they are eager to play. Even if it is with a Barbie Glamour pool filled with water and complete with miniature water slide. So I shelf the worry and relish in the right now.

Summer reflection has turned to a realized hope. While the “what will be” days will be tainted with the quirky, jumpy, hand flapping, immaturity of Goldi’s autism, there is a newness that will one day overshadow it and the only thing seen will be the glory of God.

Behold, I am doing a new thing; now it springs forth, do you not perceive it? Isaiah 43:19

Admission but Anonymous about Autism

In April there were sunny, warm, and waking up kind of blue skies days.  It seems like all winter the sky was so sleepy and lifeless and then it lit up blue just in time for April.

I admit all April I wasn’t so lit up. There was a battle in me between what I was supposed to do- spread awareness by wearing my blue shirt or dying my hair blue, or posting articles about its reality, and do what I wanted to do- just ignore it and live in the fantasy of normalcy.

Then something blue arrived home in Goldi’s brother’s school folder.

“We are Lighting it up blue” the note said.

We will be talking , sharing, and reading about autism this month.

Wear your blue on Thursday. ”

A wave of excitement spread over me.

“You should write something!” I said to my son.

“You could write about what it is like to have a sister with autism. ”

Goldi’s brother immediately scrunched up his eyebrows and said “No way! That would be WAY to embarrassing!”

Here was my chance to be the best “Light it up blue” parent.  The chance to give my Patrick Henry speech, my Patriotic Glory Glory Hallelujah music playing in the background to impress on him that we can make a difference!

“You are an amazing brother of someone who is autistic. You should share what it is like and how you feel and people will know…”

“Know what? my son interjects “That my sister is weird? That she says things that makes no sense sometimes. That she hits me for no reason?  That is not something to write about!”

“Please,” I begged. “It would be so great. I would be so proud. and besides everyone will think you are pretty cool. ”

“No they won’t” he screams with tears flowing down. “Please, do I really have to do this?”

The Patriotic music stopped. I sighed and cried myself. My own son did not want to admit that his sister had autism. He wasn’t at all ready to join in the mission to spread awareness.

“Maybe now isn’t the time.” interjects my husband.

“Son, ” I whispered solemnly, “Write whatever you want.”

He took out his weekly school journal. The one he has to read every week in front of the whole class. I watched him write probably about some basketball game or some play date,  and shrugged my shoulders.

I made intentional escape from this piercing reality of disappointment by joining Goldi in watching a cartoon on Youtube.

His closed journal caught my eye, laying there on the island counter. My son was nowhere in sight. I thumbed through the pages to find his new fresh entry.   This contained the pages of the history of his life told through his eyes. Here the pages revealed all that was important to this seven year old boy. I found the ink written page still clean and crisp.

Fun Things with Sister

My sister and I like to go to Sky Zone.

My sister and I liked the movie Finding Dory.

My sister and I like to go swimming.

My sister and I like to race our scooters.

My sister and I like to play Uno.

My sister was born with autism.

“Well, are you proud of me? ” my son asks catching me in the act.

I hesitated and pondered the simplicity of his message and yet it’s depth.  Scooters, and swimming, and Uno, and jumping, and movies, and………a sister named Goldi. Fun before autism. Fun with Goldi despite autism. Life as it is to this young seven year old.

“I’d say you are a real Patrick Henry!” I said drawing him close.

2 Timothy 1:7

For God gave us a spirit not of fear but of power and love and self-control.

Goldi gets a life

“Mom, hold out your hand and close your eyes.” Goldi commands.

“Why?” I ask

“Just be still!” she says impatiently.

Goldi ‘s finger tips tickle my palm.

I muster up a meaningful guess.

“Water!’ I said with opened eyes.

“That’s right! ” Goldi says clapping her hands.

Goldi met Helen Keller recently.  Movies, books, and pictures have led to many hand spellings and questions.

“How can she spell so fast? Did you know that Alexander Graham Bell was her friend and HE invented the telephone and did she swim in a pool? Goldi asks without pause.

I google for answers.
“Yes, she did go swimming!” I answer. ” She could not see, she could not hear. But she had a real life, an exciting one.

Goldi’s eyes brighten and sparkle as if she could see a once far off dream now within close reach. Now that Goldi has met Helen,  autism waits last in line behind them all.

” I want to be on the stage. Or maybe I want to be a puppet lady and do shows for kids. I want to be a teacher or a piano player. ” Goldi peppers out.

” Sounds  really exciting.” I say smiling.

For awhile, we were enthralled. Our talk centered on all things Helen. We were captivated with all the things she could do and easily forgot about the two big things she couldn’t.  A videos of her talking brought many wows. Google and youtube fed our fascinations.  In Goldi’s eyes, the sky was the limit for a really exciting life all because of our hero, Helen.

But then, reading on Google , I found a word. A word nearly synonymous with Helen Keller and even……  Hitler!  It was a hateful, awful, sinful word– EUGENIC- it means to improve human population with a superior gene creating a superior human race. It means to wipe out that which is inferior or defective.  Helen herself said: allowing  a “defective” child to die was simply a “weeding of the human garden that shows a sincere love of true life.”  Everything came to a thud.

Helen the hero turned brute! Brute because my autistic child, who flaps when she is excited or nervous, who speaks in echolalia when she is sad or worried, who won’t pet a fluffy kitty cat, who has trouble learning simple addition facts,  who to this day can’t survive a drive through a car wash without a scream.  My child -who makes a mess while she eats, who speaks loudly and expressively at the crack of dawn, who takes a bit to calm down when wrong has entered her life, my child whose brain works hard to keep up with the rest of the “superiors”,  My child is…. not….normal! Therefore according to Helen, my child is “defective” and not worthy of a really exciting life or any life at all!  Unbearable!  Helen the hero turned villain!

“Mom, I want to see the Helen Keller Movie again!” Goldi requests.

I am tongue tied. A hard rock pressed against my heart. Her innocence only knows Helen as hero.

I bury this dreadful secret and say “Would you play some some music for me instead?”

Goldi willingly bounces into the living room and props herself up at the piano as if ready for a concert performance. She confidently and enthusiastically plays.

For a moment I close my eyes and with faith and hope strain to see a dream for Goldi.   She begins playing Happy Birthday. I see her standing in a garden of flowers galore.  There are more colors of flowers than in a rainbow. The sun is shining down making Goldi’s hair glow. The flowers are swaying and smiling as Goldi pours a gentle shower on each bloom.  A garden of life and Goldi stands in it.  Goldi stands up and takes a bow. Her face beams as she looks up. I clap my hands until they itch.

“I did it!” she says. “I can play all the songs in my book!” She proudly announces. In our open living room with good acoustics – perhaps the whole world heard.

“Yes! I say, “That is really exciting!”

I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. Psalm 139:14

So God created man in his own image, in the image of God he created him; male and female he created them. Genesis 1:27