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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.

Once upon a time, there was a doll

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A long time ago, there was a doll. For some time, it was Goldie’s only doll. It was dressed in night clothes. Her eyes were closed. Her arms were spread out ready for a hug. She was covered in pink from head to toe. She had a slight smile to her which made her eyes grow dimples.

One day, Goldie was rocking her doll. As she swayed her back and forth, she dropped her. Her ceramic head cracked. “She’s hurt!” Goldie cried.

“Oh Goldie, you have to be more careful!” I scolded. There was a line right at the side of her forehead going down toward her ear. Goldie instantly found the box of band aides. The crack was covered in to time with a little criss cross of band aides.

“It’s okay,” Goldie said stopping up her doll up rocked her again. Goldie’s arms floated high up into the air and the doll lay loosely on her palms of her hands.

“Why don’t you put the doll to sleep?” I suggested. “Maybe she should rest now.” I thought this was the best advice. She shouldn’t rock her anymore, and break another part of her face.

Goldie stopped rocking her. She gave me the doll and went to her closet.

I looked at the doll again. The band aide criss cross hid the crack and a small corner of one of her eyes. If only there were a doll hospital that could make her well again. I knew there was such a place. If I knew where, I would have called the doll doctor right then and there.

That doll was so cute when we first saw it. She was dressed in pink from head to toe. Pink was and still is Goldie’s favorite color. Her eyes had cute dimples. Her mouth showed the beginning of a smile.

“Here is your doll,” I said handing her back to Goldie. She had two doll sized blankets in her hands. I watched Goldie as she lay one on her bed and smooth out the wrinkles. She lay the doll right in the middle. The other blanket she draped over the top of her.

“Goodnight,sleep tight!” Goldie whispered and then kissed her again right where the bands aide were. She straightened the blankest so they were wrinkle free and said “Time to sleep.” she whispered.

Goldie tip toed out of her room. I did too.

Goldie began to twirl a long ribbon on a stick. She made big wide circles in the air. I began to sigh and wonder if Goldie would ever really play with dolls. There were other dollswithout band aides. They spent a lot of time, staring at the world. Some got a change of clothes once in awhile. All of them had plenty of sleep. But only one had a crack with two band aides. Yet, Goldie didn’t mind. To her, she was her doll.

Years later, I found the doll buried in a bunch of stuffed animals that are destined to be given away. She was pink, rosy, and sleeping soundly. The band aides were still in place. I rocked it, and rubbed my fingers over her forehead. “There , there, ” I said. “Time to get some sleep.” I snuggled her into the stuffed animals and tip toed out of the room.

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.

Goldie finds out about Temple

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“Mom, I have something to tell you.” Goldie had come near to my reading and looked at me with wrinkles in her forehead and wide opened eyes.

“What is it?” I looked up from my book and waited in wonder about the story she would tell.

“She got upset. She threw things, tore paper, and banged her fists on the wall, and yelled!”

“Wow! That is what I call upset.” I said with wrinkles in my own forehead and my own eyes big. I looked out the window and saw a flashback. Goldie was stomping around and screaming. I can’t remember her throwing anything or tearing anything up. But the door was closed so that the sound of her “tantrum” was somewhat muffled. Was she throwing a tantrum because we told her we were going to the store instead of going to the post office? Was it because we made her try ONE little piece of broccoli at dinner? I am too old to remember and Goldie’s temper has been coated with sweetness now.

“I don’t think her mom was upset. She was probably just trying to figure out the best way to help her daughter ”

“She said, she wanted to go into the squeezing machine.” Goldie was extremely serious. She didn’t smile. Her eyebrows were still and straight. “Did I have a squeezing machine?”

“No,” I said, “Here is what we had” I opened up my arms and wrapped them around her.

“Ah, mom that’s way too tight.” she said.

“Sorry” I said dropping my hands to my sides.

“The doctors told her mom to send her to a school that was also kind of like a hospital and live there for the rest of her life!” Goldie stomped one foot. Her eyes seemed to pop out of her face.

“But her mother didn’t listen. She got her a lot of help. She didn’t belong locked up in a school all the time. ” I patted her shoulder and smiled.

“Was I supposed to go to a school like that?” Goldie’s face blushed a bit

“Absolutely not! You learned right along with everyone else! Right?”

“Yeah that’s right!” Goldie’s smile was ear to ear.

“But, her friends laughed at her sometimes. That is not good.”

I knew that some of Goldie’s friends had teased, scolded, bossed her around, excluded her, and done nothing but “not good” things.

“Yes, that is not good. But did she say “I am not good? Did she give up and not even meet anyone and say ‘nice to meet you’. ?

“No mom! She had a friend from school that was really nice to her!” Goldie cried.

“That is a good thing.” I smiled and counted on two hands the many friends Goldie had met and that were nice and did good things.

“Mom, Is she a cowboy?” Goldie wore scrunched up eyebrows.

Every picture of Temple Grandi that I have seen, she is wearing a shirt with a scarf pinned down with a bolo tie.

“I suppose so. She knows a lot about cows. She helped her relatives on a cattle farm.”

“I don’t like cows. I like art. ” Goldie’s nose pointed upward a little and she crossed her arms.

“That is perfect” I told her with a big smile.

“Temple Grandin has autism you know .” Goldie pressed her lips together and looked out the same window I was looking out of. There, we both saw a world that at the moment was green, and sunny, and full of blue sky.

“Yes, I know. ” I said.

“She has autism like me.”

“Yes, she has autism.”

Goldie didn’t say anything more about the Who is Temple Grandin? Book.

We just stared out the window at the summer day knowing what we knew.

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.

Book Picnic

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During the lazy days of summer, when the kids were young and I was old wanting to be young, We did something. On the days when the sun was warm but not hot, the sky was a deep blue with a few white puffs, we pulled a red wagon down the sidewalk, between two houses and the and over the bride to the library. How light and easily the wagon moved. Even over the bumps. Goldie skipped. Her brother ran. We were there in 5 minutes. It was the nicest thing in the world to walk to the library.

I parked the wagon inside the entryway. I knew the wagon wheel hobble would interrupt library quiet. As soon as we found ourselves in the children’s section, the three feasted our eyes all around us. Then, we were busy. Goldie went one way , took off one book and flipped through the pages. “Hmph” she said sounding a bit like Goldielocks after trying Papa Bear’s porridge. She pulled off three more books and finally found one to start her stack. Her brother had found every book with a train, car, truck, or animal and had nearly 10 books in a neat stack.

I picked up every unwanted book and put them in the “to be shelved” box. Then, I carefully slid by fingers down the spine of some picture books. “You must not judge a book by its cover” whispered nearby. Maybe once a twice it was the book itself saying so.

It surely was true for Goldie and her brother. Or was it? Goldie had flipped through pages of her choices. She must have known. Her brother, at least looked at the first two pages. I was in a hurry. The kids had already built a mountain of books. I needed to yank a few off the shelf and be done.

I pulled the wagon home with all my might. A few bumps scooted books off the wagon and onto the sidewalk.

“That’s mine!” Goldie cried. “And mine!” said her brother.

“Hold onto them. Home is just 20 steps away.”

I parked our load under the one shady tree in our front yard. Then I spread out a blanket. Goldie and her brother made their pile of books on each aide of the blanket. I brought out popcorn and lollypops.

For the next 30 minutes under the shady tree, we were in three different worlds. I had found a book about a girl who planted a tree. My eyes left the pages for a minute and looked up at the one that shaded us. Goldie was crunching on popcorn and floating her fingers around the bright colored illustrations of Jack and the Beanstalk. Goldie’s brother with lollipop red tongue and lips, had made it through half his stack already. Probably had the words memorized with one read.

Soon, they both had a stack of books at their side again. Tall and straight with no wobbling books at the top. Goldie stood up stretched and began to twirl around. “Fee Fi Fo Fun!” She cried. How did she know? I wondered. “Vroom!” cried her brother as he began chasing after a robin. He actually outran him. Perhaps foreshadowing of future days for him. I had only took in a few pages of my story. But I could dream on those for awhile. We took our books inside for an inside book picnic. Maybe the next book picnic would happen on a rainy day. But I had hoped that I was teaching both Goldie and her brother, that any day is a perfect day for a Book picnic.

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.

Wonderings about Autism

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I have asked a lot of questions about autism. Some, in my learning, I have answered. Not in a “that’s a fact” way, but in a way that helps me stop asking that particular questions. Some, reside in wondering. Because when it comes to autism, it is a mystery. There is no real answer sometimes to the why, what, and how. Sometimes, that will always be the case with autism.

Is having autism a sin? Is it because I am a sinner who gave birth to a sinner? Did God purposely drop a stitch when He knit Goldie together in my womb because He had a purpose?

Does Goldie’s brain look different than mine? Aren’t all brains uniquely designed even though we all have the same parts but God uniquely put us together. Each brain is crafted wonderfully. So is Goldie’s brain all that different than mine?  

Do any nonverbal autistic people learn to talk without a computer or tablet? Are their voice boxes only capable of grunts and groans? Or is it like selective mutism where they are choosing not to talk because of fear, stress, or worry? I told a story to some nonverbal autistic kids. After telling it only two times, they were saying some of the words. Was that some sort of miracle?

Why do some autistic people say that autism is their superpower? What do they mean? Is it a self-esteem boost? Or is it a word that really describes who they are? Is there really something “super” about them like having an excellent memory, able to draw a detailed blueprint of the Smithsonian having seen it only once, or like having an enormous file cabinet of facts inside of their brain. Goldie has never said her autism is her superpower. I wonder why? 

How do you convince people that if you have meant one autistic person who have met one autistic person. That’s all.  “I just know that they are autistic” is something I heard a lot. Especially as a teacher. But this label is not the one for all! Right? If you have bitten into one apple, there are hundreds of other apples to bite into as well.  They all have a different color- not just red. They all have a taste and a texture- not just crunchy. And not all apples are made for apple pie either! 

Like cancer, is autism doomed to have no cure and only treatment? It is a life long condition. So it is a life long journey. But if we can send a guy all the way to the moon, why can’t we find a cure for either one? Would those with autism want to be cured? 

I wonder what people who live and love someone with autism would say to a person who does not know anyone with autism? It seems like if you live with someone with autism, it becomes so real, so natural, you almost can’t imagine it any other way.  People who live, love, and care for someone with autism, are so used to this way of life, they might not even see the word “autism” tattooed on their forehead. They just know them. They have a name not a label. This is our daughter “Goldie,” not this is our autistic daughter, Goldie. 

I wonder what people with autism are thinking or imagining when they see other people without autism doing they don’t do? Goldie doesn’t drive yet. She doesn’t take AP classes to earn college credit. She may not every marry. Do those who have autism look at all the neurotypical kids without autism and wish, dream, and hope, they can do the same things one day even if not now?