Tag Archives: writing

The world outside was suddenly transforming so I pressed my nose against the window looking out into a world. I squinted my eyes to see if I could see the details of one snowflake and then I thought of Wilson.

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Wilson. Wilson loved to play outdoors. He loved to catch butterflies in the spring time and see sniff the sweetness of apple blossoms. He loved to leap with the grasshoppers in the summer. In the fall, he loved to jump in the leaves and feel them fluttering around him twirling down. In the winter, he would stretch out his hands and stick out his tongue into the cold crisp air, and feast on icy crystals.

If I blinked I could see through the winter shadows a young girl in a pink snow suit and white puffy hat standing in the middle of white. Goldi has her arms spread out and her nose pointed up. Every now and then she touches her nose to her mitten and sees what has come down from the heavens.

Wilson knew a secret about snowflakes and it seemed like only he knew the secret. He knew that each snowflake was different. He knew that there was no way to count each snowflake that fell. But he did know that every single flake he did see ( and that was many) was different. He knew because as he watched them fall, he wanted to save their beauty for all to see. So he sketched them. But they melted before he could finish.

Then, his mother gave him a camera. It was a camera with a microscope. He could zoom in on the snowflake and capture proof of what he knew was true. He took so many. It wasn’t easy. But he wanted to share his secret so that others would have the same joy in their hearts like he did when the snowfall.

“What do you see?” I was interrupting the precious hush of the snowfall but I wanted to know if Goldi knew the secret too.

“It’s it’s… like like a very cold flower.” she said. “It’s really really nice. It’s …. Prettiest- Goldi whispers the last word. It’s the best word she can think of to say. She is lost in wonder and is speechless.

“It IS the prettiest” I would say back smiling.

Wilson thought that snowflakes were as beautiful as apple blossoms and butterflies. He called them masterpieces. Most people didn’t care at first. But then, after he took hundreds of snowflake pictures, they started to look and wonder too.

One night the snowflakes were coming down so fast. There were millions and millions of them. Wilson was walking right into a winter storm. Wilson got sick and he died. But now, he is famous. There is a monument somewhere in a small town in Vermont. There is a book written about him too. It’s called Snowflake Bentley. If you read the book, you will know more about the snowflake secret.

Yet, this secret goes beyond the very fact that there are no two snowflakes alike or that they are prettiest. It’s a secret that puts anyone in a state of awe. Perhaps Wilson knew the deepest secret of all. I think Goldi knew then just as she knows now. The only way to know this secret is to be lost in wonder as you stand in the middle of the falling flakes. You have to believe even if you don’t understand. You have to believe that the snowflake comes from the highest Heaven where the one who makes them every winter lives. He makes them and with each one He whispers’ “I love you. You are mine. You are the prettiest.”

“He hurls down his crystals of ice like crumbs. Who can stand before His cold?

Psalm 147:17

Knitted

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Lately, during night time talks with Goldie, I have been knitting. Conversations make the rows increase faster. One night, all that was heard for a long time, was the clickity clack of the needles.

“What are you thinking about?” I finally asked as I switched from knitted row to a purl.

“Oh, just stuff.” Goldie says looking at my needles bob.

“What stuff?” I asked.

“Like you know, how I have autism.” Goldie had just said what she never said before. She had been asked “What is autism?” and she had answered “I have no idea.” But this time, she knew autism meant HER.

“YOU have autism?” I stopped purling and raised by eyebrows. My mouth opened wide to say the word again:”AUTISM? ” I knew that if I continued I would forget I had to purl and not knit. I wasn’t going to drop a stitch or lose my stitch pattern, and spoil the whole “work of art”. Here we go, for the first time, after 15 years of Goldie silently accepting she has autism, hearing the word, thinking over why’s, and analyzing the probably nots, she says the one word that she’s not said and we were waiting for her to say.

“Mom! You know I have autism! ” Goldie stretched out a grin. It’s fine I guess.” Goldie shrugged her shoulders.

“Well, I think you are more than fine.” I purposely made my needles click loudly.

“True.” Goldie has been saying that lately when she agrees. Then she stares in puzzled wonder this time. Then she says, “Why?”

I begin to knit again. Knitting the garter stitch energizes me into eloquence.

“Because you were knit!”

Goldie didn’t say “what?” She didn’t say, “No I wasn’t!” She didn’t even say, “That doesn’t make any sense!” That is what I suspected her to say. But all she did was watch me make take stitches off one needle and make new ones. The garment was getting longer and wider.

“Let’s see, I’ve done 15 rows of garter stitch, then I purl two, and then 15 rows more,” as I say this out loud, my needle touches the tiny little V’s on what I’ve finished so far

“What are you making anyway?” Goldie brushed her fingers over the garment’s edge.

“Well, it’s just a burp cloth. It’s not a sweater or a dress or hat or mittens or socks.” I shrugged. I can’t knit like your great grandmother. But still, it takes time and I have to be careful so that it can be a burp cloth for a baby to rest their head on something soft, burp, and feel fine, maybe even more than fine. “

Goldie had that same puzzling wondering look in her eyes.

“True, ” she said, “That is true.”

Social in a Story

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I don’t mean to discredit Carol Gray by any means. She has invented the story of stories to help autistic kids navigate the how and why of the world. The social story helps. It gives kids a spine to stand strong in so many situations that make up life. From the dentist, the fire drill, getting a haircut, to a pet that dies. You name it, there is probably a social story on it. Ms. Gray thought about kids. She thought about not just autistic kids but about what kids needed to know , understand, and do. She thought about how many kids have questions and are confused about the new things that come about their journey. They have been absolute miracle workers with kids!

But here is a confession, we didn’t use and still don’t Social Stories much with Goldie. We had a plan, we explained, we taught, we practiced, and we celebrated. But I never had a library of genuine social stories to pull out to “save the day” in a moment of challenge. Perhaps, I should have.

Instead, I read her lots of stories. We read her Pete’s a Pizza And so… one rainy day when Goldie was three, Goldie said: “It’s raining Pete!” So we tossed her up in the air and landed her on the couch. We did it many times until the couch lost its bounce. When she was two, she cried every time we left the room at night when she was supposed to go to sleep. So we read, Peek a Who? and practiced covering our faces with our hands, a blanket, or hiding behind the door. It helped….some. On a winter day, that I made chocolate chips cookies , I firmly told Goldie “only two ” and with chocolate all over her face and fingertips, I wiped her clean and read Frog and Toad’s Cookies and from that day forward, she decided two was enough and we could feed the rest to the birds. Once when I told her she had chores to do, ( including mopping the kitchen floor), she said “Are you my stepmother?” “No, I am your mother.” I said. Then, where in the world is my fairy godmother?” Goldie accepted life’s work even though her fairy godmother didn’t appear.

Goldie frequents the library. She reads books that she would rather not read but is required to read. “Ugh!” she cried reading The Outsiders, “It is so sad that he has had so much trouble. When will he ever be happy again?” Goldie said after reading The Outsiders. Compassion brewed inside and she began to wear her heart on her sleeve. She reads and insist that a happy ending is the only kind of ending. So when the princess from the story Fairest is poisoned, it stops her in her tracks. She may throw up her hands because she knows this world has too much trouble. But she has leaned to fold her hands in prayer because of all the trouble. She puzzles over all the “looks” and secrets and do’s and don’ts of life of real ladies and gentlemen of Pride and Prejudice who prance around doing practically nothing all day. “Just dance with her!” she cries because Mr. Darcy is too rich to dance with lowly Elizabeth. Or maybe Elizabeth is out to prove she’s too good for Mr. Darcy. Goldie combs her hair, brushes her teeth, and dresses in “comfy” to take on her day wherever it leads.

Thank you Carol Gray for your stories. They are still out there and still need to be used. They bring understanding to the confusing and the new. They always will. But also, thank you William Steig, Arnold Nobel, the Brothers Grim, Jane Austen, SE Hinton, and other authors who tell a good story.. So good, Goldie has learned for life from them. She still does. Lots she’s learned from those stories. It’s not how Carol imagines the story should be for life learning. But these stories open up a new understanding. They still do.

Raining

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After it rained, steam rose from the ground, and swirled around. Goldi put on her bathing suit, ran out into the steamy air, and started to jump. The puddles were clean, round, and deep. They were perfect. A gift the rain gave to Goldie.

“There’s another one way down there!” Goldie cried as she skipped through a stream that rippled down the street and swirled around at the end of the culd de sac. The giant perfectly round clear puddle was suddenly lit up with sparkles. The grayish blue sky canvassed a rainbow. The sun lit it up long enough for everyone to look and wonder.

“Come on! It’s great!” Goldie’s hair was combed with fresh water drips. There was not a dry spot on her. Her wide open smile seemed to drink in the refreshment from the sky.

That was the happiest kind of rain.

Goldie held a blanket and a giant stuffed pink rabbit. She sunk down in a puffy beanbag jammed into the corner of her closet and closed its door.

“Goldie? Goldie are you in there?” My voice accompanied my eager knocking on her bedroom door. “Are you ok?”

Goldie didn’t answer. Even if she did. I would not have heard her. The thunder kept interrupting.

The sky blinked many times in a row. Then there was darkness.

“The power went out!” Goldie burst out of her closet. “Where is the flashlight?”

“Look,” I said placing the giant flashlight in the center of her room.

Goldie looked all around at what looked very familiar but to be sure- she felt each toy, book, and pillow. The darkness had not erased everything dear to her.

“When will the lights come back on?” she asked squeezing her pink bunny again.

“I am not sure. We’ll have our eyes closed most of the time anyway. It’s bedtime. “

“Oh,” Goldi said hurrying herself in blankets and other stuffed animals.

That was the mean and scary kind of rain.

“You are not going to like this question,” Goldie sighed and looked one way and then the other. “I am just wondering , is it supposed to rain tonight?”

Since spring, Goldie had been asking me the same question nearly everyday. Knowing if it would rain, cancelled any inkling to have a friend over, go shopping, or walk to the library. If I asked her, “Would you like to go to the bookstore?” She would say, “Maybe another day, today it is supposed to rain.”

“I will look at the forecast.” I assured her.

The forecast didn’t look very assuring. A nearly 100% chance of rain. Rain that we needed. Rain that would green up the world. Rain that would feed the lakes, rivers, and streams. Rain that would grow her favorite vegetable and make my flowers grow.

“Yes, it is supposed to rain. It says 100% chance”. “

“Is it going to be bad?” Goldi wrinkled up her forehead She squeezed one set of fingers with the other hand and then rubbed her palms together.

“I don’t know. But there is one thing I do know!” I said bouncing eyebrows up and down.

“What?” Goldie’s eyebrows jumped up and stayed up high in her forehead.

“I know who wants it to rain. I know who will show how big and powerful He is when it does.”

“That’s true. ” Goldie said looking out the window. In her long look, the sky was sometimes full of clouds and sometimes full of sun. The trees waved to her and then were still. She could hear the frogs singing.

The windows were soon washed. Then the whole house seemed to be in a bath. It seemed like a bucket of water was being dumped from above. The trees must have waved goodbye. We could not make them out through the window. . All we could see was wet. The sky didn’t blink but the bossy thunder made the window pane rattle.

“I’m scared.” Goldie said softly.

“I know,” I said standing shoulder to shoulder next to her. “and HE knows too”. I pointed up to the sky.

That is the stretching and growing and have to be brave kind of rain.

That is the rain that we have now.

Wasted Why

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We scratched our heads in silence when two doctors gave us their report. One talked on and on about all the science, the genes, the environment, my pregnancy, and everything else under the sun using all kinds of important words that were in a more sophisticated intellectual book than a medical textbook. The other spoke plain English but did going one way- a child’s brain is a mystery and that way- think of a microwave and a toaster. After all the talk, we wondered: this “Does our child have autism or not?”

“Yes, ” said the pediatric neurologist.

“Now what?” I said with watery eyes.

“You begin your journey,” he said, handing us a list of resources.

I should have looked at those resources right away began to make phone calls, read, interview people, listen to lectures, take notes, make appointments, and prayed.

I didn’t do any of those things. I was stuck on a question I asked as a child and was asking again. I was seeking and pressing and eager for an answer. Why does Goldie have autism?

That kind of why that goes beyond the fun and curious why. Like why is the sky blue? Why do we have a belly button? Why do people say “God bless you” after someone sneezes. Why does the ocean have big waves sometimes and medium sized waves other times? That kind of why can be explored with excitement and make one feel smarter and hopeful. But this kind of why did totally the opposite. I was feeling sad, frustrated, disappointed, and stupid.

Why did Goldie have autism? Did I eat something I shouldn’t have during pregnancy? Was I too old to have a baby? Did I carry a gene that caused her to have autism? Did I commit a sin that was unforgivable? Did Goldie not have a healthy brain? Did she get a vaccine that she shouldn’t have? Was she exposed to some toxicity? Did I fail to teach her something as a baby? I kept asking and thinking the answer was out there.

But I ate nothing but fruit and vegetables during my pregnancy. If Sarah wife of Abraham had a baby then I was certainly NOT too old. I had good genes, some that produced doctors, law makers, philanthropist, teachers, farmers, writers, and even pastors. Doesn’t Jesus forgive us of all our sins? Goldie knew to eat, drink, walk, run, speak in tongues, and kiss her baby brother on the head. Aren’t those signs of a healthy brain? I had all the vaccines that Goldie had as a baby and last time I checked, I didn’t have autism. The only thing toxic I could sense in our environment was the smell of manure in the area. Goldie was spoken to, sung to, read to, comforted when she cried, taught to breathe in the fresh air, and knew the meaning of the word ‘no”. So why does Goldie have autism?

It’s been a journey of therapy, lessons, reading, talking to others, IEPS, goals, more disappointments, lectures, bad news, sadness, and worry. It is enough to sit back in a lazy boy chair and ask again, “Why does Goldie have autism?”

It took almost 20 years to learn the answer. Even though I know the answer, I still have moments of asking- why? Twenty years, of keeping my eyes and ears open to discovering the answer. Every time there was a food she finally ate. There was the time she finally wrote her name and even made it look calligraphic. There was the time she was asked her favorite color and she said “turquoise”. There was a time, when she read her first story out loud. There was the time, she rode a horse. There was a time when she made her first friend. It was those times, I knew. But there were days, when I kept asking “why” and I missed the answer. Sometimes I still do.

Why does Goldie have autism? Because God is showing His great and amazing work in her. Each day, He does. He doesn’t quit answering. He has been answering “why?” all these years.. God is showing Himself great through her. That’s it and should be all that matters.

A review: Autism what does it mean to me? by Catherine Faherty

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Once I asked Goldie, “What is autism?” To this day, I haven’t had a real answer from her. She’s lived with autism for nearly 18 years now, and today the word is still a mystery. Some of her friends have shared that it is their superpower. Some of them remember their diagnosis day and celebrate it like a wedding anniversary or a birthday. This only makes the mystery of autism seem more mysterious.

Before Goldi started high school, this big thick book was set in front of me.

“Have you ever read this book?” her teacher asked me.

“I’ve never seen it before. Is it good?” I said predicting that the answer would be a nod or a it’s pretty good.

“It’s a must read.” the teacher said.

I had read other must reads. But was skeptical that this workbook like book was a must. I preferred a testimony, a nice feel good story, or a book that was turned into a movie it was so good.

The book has twelve chapters and 479 pages. It is a textbook. It has workbook like features including blanks for various responses about autism, friendships, routines, communication, people, and other life topics. There are social stories, strategies, examples, and a wealth of information.

In the introduction, Goldi immediately circled among the list of other questions:

What does autism mean? She recorded a few facts about her, validating what was absolutely true about herself BESIDES having autism. The concept of identify first at the start is presented sensitively. The words a simple, descriptive, and invite the autistic person to freely choose how they would describe themselves knowing they have autism. Goldie started with “I am Goldie”.

Throughout the book, Goldie discovered more of who she was. What was especially surprising, is not that she is now able to define autism but instead she was able to understand who she was and how to better walk with courage on this journey being Goldie.

It has become a book on hand for relearning, equipping, and most of all celebrating what Goldie has known all along… “I am Goldie. ”

Stories for life on the Spectrum

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The first sign of Saturday morning was the whisper of pages that came from Goldie’s bedroom. The whooshing page turning sounded a story’s beginning, middle, and end that captivated Goldie long enough for me to drink my morning cup of tea. Stories for Goldie were visits to the house of the five little monkeys, a picnic with Little Bear and friend, or a night on the phoroscaent sea. Storying for Goldie was life learning on the spectrum.

After an hour, I heard the door pop open. Goldie hopped out ready for the day.

“Hungry for breakfast?” I asked.

Goldie didn’t answer. She went on downstairs and began to play with her brother.

I peeked into her room. There was a mountain of books on her bed. The sagging mattress surely lost its spring . Nearly every book had been pulled off the middle shelf and arranged just so on the top of her bed. I loved children’s stories so, it didn’t take long for a whole bookshelf to be full and then overflow. I had hoped that Goldi was story girl just like I was. The stack of books on a sagging mattress, proved my wish came true.

I eyed each book spine and learned more about where Goldie had been in the wee hours of the morning.

Five Little Monkeys by Ellen Christelow. The perfect reminder of bed time routine. Bathe, get pajamas on, brush teeth, and … then jump on the bed! Routines were like a promise for Goldie. They should never be broken. They provided security and developed a sense of independence. Mundane as some are they must be done each day. Cute little monkeys taught her to smile, laugh, and pepper a routine with joy.

The Big Red Barn and Good Night Moon by Margaret Wise Brown. Goldie knew that the world was big but hidden inside were small but important discoveries just like finding a little pig learning to squeal in a Barn or a picture of a cow jumping over the moon.

Goodnight Gorilla by Peggy Ratham. Goldie always kept a watchful eye on that Gorilla. Just like she does when she sees someone who is doing something that stirs up a question inside. She learned to be observant and notice things that some overlook.

Pancakes for Breakfast by Tommie DePaulo. Goldie spoke gibberish. It was a foreign language no one could understand. But wordless book helped Goldie develop language she held inside for some time. And one day, she could say things, things that should be said, with feeling. Things said during a climatic moment that demanded attention. After the dog and cat spoil the old woman’s pancakes, Goldie learned what to say in such climatic moments: “Oh No! What a mess!” She did and it was always appropriate for her to say so.

Make Way for the Ducklings by Robert Mckloskey had a bright yellow cover. The pages were filled with life like illustrations that moved. I knew Goldie’s favorite part was not when the ducks crossed the street. But when officer Mike went to make a phone call to tell another officer to be careful the ducks were on their way. It was also when Mrs. Mallard waddled with an extra little wiggle. Goldie smiled and rested on both pages. Her look told me that she felt like all was well and right with the world. Sometimes she needed to know that and still does.

Officer Buckle was Goldie’s hero. She knew his rule making talent was useful. She knew it before anyone in the entire Napville School. Perhaps she knew she had talent. The world might be slow to recognize it. But it was there. It still is.

I wondered if Goldie would ever have some really truly friends. Amos and Boris gave me hope. All along the phosphorescent sea, underneath the sky glittered with stars, there was an unexpected friendship. A whale and a mouse would be the best of friends. Even if they would only be present for a very short time, it would be a forever friendship. Goldie patiently waited through the sophisticated vocabulary just because the words sounded so important. But also because they helped speak of a longing she had – a true friendship.

It was Little Bear that taught Goldie how to play. She didn’t know anything past putting dolls to sleep. But then, she was jumping in puddles, fishing with a tree stick, and stirring up cupcakes. All because of a fun, curious, little bear, whose friends knew to play because playing was living life at that age. Little Bear helped Goldie rest in times of play. She had not known the world of play for so long. Reading this story, finally helped her realize she was born to do it. after much ignorance of the fact that she was born to do it.

Stories for life on the Spectrum are not just any stories for Goldie. Just like for any reader, we pick up or put down a book for reasons only we know. But for Goldie, these are some that changed her. They are now a part of her life and always will be.

As she’s lived life on the spectrum, Goldie holds these stories dear. They taught her, shaped her, and helped her become who she is and who she will be later after more book mountains, more storying, and more living.

PROM

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The fanciest dress she had ever seen was hers. It was pink and covered with jewels. Goldie immediately spread her arms out and did a small twirl when she found herself inside the dress. Her smile looked bigger and brighter than the Queen of England’s. We combed her hair, added a few rosy touches to her face, and added some extra jewels. 

“Here, are you glass slippers,” I said handing her some sparkling flip flops I had bought for her last summer. She had never worn them before. 

“Mom! They are not glass slippers,” Goldie declares.

“I know but they might as well be.” I said placing them in front of her feet.

Goldie lifted her dress slightly and slipped the flip flops on one by one. She hadn’t worn them once. But they fit perfectly. Just like the ones the fairy godmother had magically appear on Cinderella’s feet. Goldie lifted her dress again and glided over to a chair in front of the window and looked out. Her dress skirt draped perfectly all around her. 

Goldie didn’t look sad. She didn’t look scared or nervous. Her hands rested on her lap. She just looked out into the day that would soon turn into evening. She was still for many silent minutes. 

Goldi had once been so bouncy. She would run through the kitchen, living room, dining room and hallway with some bright green flip flops on and a hot pink tutu.  She would sit on a swing for hours and fly to the sky with bare feet. She would twirl around in her pretend dress up Cinderella dress and then crash to the ground with a belly laugh. Now, she was still. Her head looking out and her eyes looking so intently at a dream.

I stood in the doorway and tried to be as still as Goldie. My heart was keeping me from feeling relaxed as Goldie seemed to be. Seeing Goldie so still was so beautiful. I have seen brides look the same right before they walk down the aisle. My mind wandered out into the day too.

This was the first real Cinderella moment in her life. The first prom that she would attend looking more and more like Cinderella than she had ever before. As a young woman, we have dreams of wearing our Cinderella dresses especially the one that we wear when we are the bride walking down the aisle to our groom. But for Goldie, that moment doesn’t seem possible.

Yet, it does seem possible. Because as she sat there, I did see a bride! Through all of her high school years, her concerts, her classes, her dances, …all those times when things were fancy, something ever so magical was happening – more magic than fairy godmother could do. A miracle was in the works. This Cinderella of mine was getting ready as a bride waiting for her Groom.  One day, He will come, and she will be ready. 

“For the wedding of the Lamb has come, and his bride has made herself ready. Fine linen, bright and clean, was given her to wear.”  Revelation 19:7

The biggest 100

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Last year, during Christmas, Goldie met a girl named Wanda. She so poor she only had one dress. But Wanda said she had 100 dresses. The girls laughed at her as they stared at her plain blue dress that she wore everyday to school. One girl had a nice red velvet one. Another girl had a silky green one. Day after day, Wanda would tell them she had 100 dresses. The girls would laugh at her.

“I do too!” Wanda declared.

“I don’t even have 100 dresses!” said a rich girl.

Then one day at school, Wanda’s desk chair was empty. The teacher found a large envelope with a note attached.

“She’s moved away. ” the teacher shared, “Wanda, has moved to the city. Her mother says she won’t be teased there.”

All the girls watched as the teacher opened up the envelope and passed out a picture to each girl.

“It’s my silky green dress!” cried one and I am wearing it!”

“I am wearing my red velvet one! It looks just like me!”

The girls realize, Wanda really did have 100 dresses. She really did line them all up in the closet. She thought not only of the dress but of the girl who wore it. She noticed them all and took care to remember.She had called them friend.

Goldie remembers Wanda. She feels sorry that Wanda was laughed at. She feels even more sorry that she only had one dress and not 100. Then she goes into her room and closes the door. All is quiet for hours. I know that she is in there because I can see a little bit of her shadow in the space between the door and the floor.

Why does Wanda touch Goldie’s heart and mine? This storybook character has lived in many girls’ lives but maybe only for a short time. They have lots of friends. They don’t have to WORK to get friends. They just win them over naturally. They come and they go and then they make new friends. Wanda and Goldie think the same when it comes to friends.

When Goldie is away, I sneak into her room. There are stacks of sketch books underneath her drawing table. I pick up the one on the top. Goldie will know I was here if I put the book back in the wrong place. I carefully turn the pages-

The first girl smiles at me:

Ada. Goldie has written at the top. Some girls wear too short of a dress in my opinion. But Goldie knows Ada and she sees “pretty”.

Then I see another: Eva

Eva is wearing her party ballet dress. Goldie has seen her doing ballet many times. Goldie can’t fly across the stage without falling over. But Eva can and Goldie watches with wonder.

And another: Maralisa. She is all smiles all the time. She has her own fun and funny dress to wear each day depending on her heart beat.

The book pages are wrinkled, worn, and full of dresses and friends who wore them.

There are more than a 100. The next book in the pile are full of still more. Surely if I spent the day counting there would be more than a 1000 dresses and the girls who wore them. These girls have been seen by Goldie and remembered. Friends with them or not.

Goldie has at least 100 dresses, all in a book. She will always have them and remember the girls who wore them. Just like Wanda. Only Goldie is still drawing dresses and the girls who wore them. Friend or not.