Category Archives: Uncategorized

Flower in the crack

I saw it and it made me jump. Just like the name of the flower. It certainly earned its name this time. When I watered the flowers in the flower boxes for the first time, there it was. It wasn’t planted there. It just jumped up out of the crack in the patio. It was a miracle.

Miracles may seem few and far between when it comes to the journey of autism or for any day of life for that matter. Or are they? If I think carefully, even the smallest of things can in fact be miracles. It’s a miracle that Goldi is now surpassing me in height considering she was born two weeks early which may have contributed to her development and readiness for life in this mixed up world. It is a miracle that she is eating what is on her plate rather than just a menu of just five foods. It’s a miracle that even though she is shy around a new face or even a familiar one, she read an entire poem in front of a whole group of kids. It is a miracle that she petted a Golden Retriever once when she always watched her from afar because she was afraid. It was a miracle that she went to sleep all on her own one night, after I simply said :”Good night”. A miracle that after speaking in tongues for so long, she is speaking in the same language I am and reading and writing in it too.

I won’t blabber on and on about miracles. Because if everything that has happened on this journey was a miracle, then it wouldn’t be so miraculous. What’s more, my life is miraculous, but isn’t yours too?

A miracle is something supernatural. Something that doesn’t follow the laws of nature or science or whatever law that has been written that says that if it doesn’t make sense it’s either nonsense or a miracle.

It certainly didn’t make sense that the flower jumped up from the crack. I didn’t plant it. I didn’t water it. It’s not even a weed. It’ a genuine flower! What’s more, it’s only gotten bigger.

Goldi is in a point of transition now. Next year, she will be in high school. It’s a miracle we have come all this way. Maybe you too are saying the same thing, in the midst of your transition. With them, come things we hope for, things we expect, and things we fear may happen. I have no idea what will jump up in the future.

“Mom! Do you want me to pick and put it back where it belongs?” my son asked when he noticed it.

“No! It should be right where it is.” I answer. “It’s a miracle.”

Someone’s Story

So many have autism. And so many times, the story is full of challenge, hopelessness, bitterness, and just plain despair. They say that if you have met someone with autism that you have just met someone with autism. It’s not as if you’ve met one you’ve met them all! Each one has a different story.

Maggie was first grader. She was lively and energetic. She cried as though the world was caving in when she lost her hat. She couldn’t write her name without it looking like chicken scratch. Her belly laugh bounced off the walls right in the middle of a spelling test. She could read way past the first grade Little Bear books.

But one day, she was Goldilocks in our first grade play. We performed it for the second grade. One of the second grade girl’s mother had just died. The girl laughed every time ‘Goldilocks” came on the stage. At the end of the play, Maggie took a bow and everyone applauded loudly. Maggie, the one who made the girl laugh, was someone with autism.

Henry could yell, laugh, scream, and groan. He had to be watched like a hawk or he might run away or grab something he shouldn’t. There was never a word that came from his mouth. One day, a caretaker was reading to him. . He let out a few grunts and giggles. Did he understand what he heard? The caretaker had no idea. Maybe just the sound of her voice was enough. When the story finished, Henry put his hands on his caretaker’s hands. He groaned. He let out a YIPE! “YAH!”

“What is it Henry? What are you trying to tell me? ” asked the caretaker.

“YAH! WA!” Henry said. .

“YAH! WAH!” Henry said.

At that moment, his caretaker knew. Henry wanted what all children who have just heard a story that they really liked want and was saying what they would say- “Read it again!”

I wish I knew to this day what story she had been reading. I wondered if I would say ‘read it again’ just like Henry did. Henry is someone who has autism.

She used too speak in tongues and still does sometimes. She’d rather have the wind comb her hair than a hairbrush. She cares little about matching her clothes and looks the other way or digs her heels into the floor when she sees someone she knows. To this day, she cannot add 2 plus two in her head. She has a handful of friends and seems to “live” in story land sometimes.

One day, she was eating lunch in the cafeteria. Her friends began to joke.

“Don’t you think I look like Jesus?” a friend asked.

She should a picture that she had drawn. She had written her name at the top, then crossed her name out and put ‘Jesus’.

“I don’t!” one girl shouted.

Later in class, the girl who shouted “No”! wrote an email.

If you really want to know who Jesus is. Then just ask me. I will tell you. Please don’t make fun of Jesus.

That girl’s name was Goldi. She is someone with autism.

I’ve learned it easy to believe that Maggie, Henry, Lilly, Goldi or any other someone with autism is not just someone with autism but a great someone– because they have autism.

And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he would be born blind?” 3Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him. 

Because of Autism

At age 3, we waited several months to have her evaluate and spent a great deal of money to know the results. At age 4, she went to preschool and began speech and occupational therapy. At age 6, she started kindergarten and worked with an autistic teacher. Why? Because of autism.

We never drove to the carwash with her in the car, and still don’t. We cut every tag off her clothes. It took years for her to finally eat a hamburger instead of just the bun. We went through a year or two of poor sleeping habits. She still looks away in the distance when meeting someone new and even when not. Why? Because of autism.

She thrives on routine and appreciates knowing ahead of time of any changes. She would rather have the wind comb her hair than a hairbrush. She flaps her hands when she is nervous or excited. She has a few friends not many. Why? Because of autism.

Because of autism, all of this and more are challenging. We live these days knowing that for the rest of our autistic daughter’s life, there will be trials not common to the typical person. Why? Because of autism.

‘Because’ is a word we use a lot. “Because I said so, because I am busy, because it’s raining, or just because. That’s it. No other word to use. Because there is no other word to use when you simply don’t know why. And there are times we ask ourselves, Why autism? The answer seems to always be because – period.

But there’s another “Because of autism,”. It makes us smile. It is exciting. It’s a ‘because” that removes the period and puts the ellipsis. Because……..

She sees the needle in a haystack and remembers things like holding the 2 thousand dollar check when talking into the bank and therefore didn’t loose it. She remembers the last name of the very nice girl that we met at church She sees the living room transformed from winter decor into spring even with subtle changes. Why? Because of autism.

She offers someone her bag of her favorite potato chips at lunch even though she was looking forward to eating them herself. She draws characters with eyes that say ‘Hello! It’s so nice to meet you’ and we want to know about them. She forgives and forgets in a wink if someone has wronged her. She knows the name of every character of every story that she has ever known. Why? Because of autism.

She can let out the biggest belly laugh and light up the room. She can be excited about seeing the mallard duck arrive every spring. She changes the bath tub in her doll house into a bed for a doll, or a storybook picture page into a place where tiny doll figures play. Why? Because of autism.

Because of autism, there is both hindrance and hope. Why couldn’t we just have the latter? Because- period.

You have been able to do that because God’s Holy Spirit is in you. He is more powerful than the spirit that belongs to this world. 1 John 4:4 Easy English Bible Version

Jet Pack Man

Once when the sun was either shining on the white snow, or the green grass, Goldi and her cousin were sketching. Goldi made long strokes back and forth. While her cousin made quick ones all around. As I watched, I was reminded of those artists in the courtyards of some European city who whip up a masterpiece in moments for touristy passerby’s.

This story is conjured up mostly from my imagination, using a character from someone else’s. That someone else was Goldi’s cousin. It has the heart of the two people, Goldi, and her cousin, that gave life to this character invented in minutes. This is the story of when Jet Pack Man was invented.

“Who is that?” says Goldi with her eyes popping.

“Jet Pack Man!” Her bearded cousin flicks the penciled sketch.

Goldi rubs her hand across the paper and then hands it back.

“Who is that?”

“Well, you see Jet Pack Man moved too slowly. His mother told him he needed to get to school on time. So he got himself a special backpack. ”

“Well, school starts at 7:35. ” informs Goldi.

Her cousin threads his fingers through his thick , long, brown bangs.”Well, he wasn’t getting there until 7:52. So, his mom got him this special backpack. ”

“Why?”

“Why? You mean why is it special?”

“Yeah.” Goldi says looking closely at the picture.

“Well, it can carry all kind of things like books, pencils, erasers, …”

“What about fidgets and a water bottle? Goldi interrupts.

“Oh yeah, for sure. But here’s the thing- ” He raised his pointer finger. His bushy eyebrows go up too.

“What?” Goldi’s eyes pop again and even sparkle a little.

“Jet Pack Man can fly!”

“He can?”

“Oh yeah! See here, there is this strap on the end of his backpack. All he has to do is pull it and he just takes off like a real jet. And it makes it a whole lot easier to carry all his stuff to school!”

Goldi puts her hands to her cheeks and squeezes them together. Then she flaps her hands a little. She is excited but a little scared at the thought.

“That would be too loud.”

“What? Nah! It’s not loud. It’s fun. He can fly up to the clouds and see all kinds of other kids dragging their feet carrying their heavy backpacks to school. He gets to fly to school. And his mom is happy because he gets to school on time. “

“What grade is he in?”Goldi is interested in more of the story.

He taps his bearded chin with several fingers.

He looks at her trying to remember what grade Goldi is in.

“Uh maybe 6th grade?”

“Hey! I am in 6th grade! Goldi jumps up and down. “But I don’t think he goes to my school. ”

“Well, maybe you haven’t seen him on the ground. But you can look up in the sky to see him. ”

He smiles so big his eyes squint.

Goldi stares into the distance. Her faces matches her cousins.

“Wait. What color is his backpack?”

“Oh, I don’t know. Maybe blue or red.

“Or both?” Goldi’s voice goes up.

“Yeah both! Probably both.”

“Hey! I think I have seen his backpack before!” Goldi jumps up and down again.

“Really?” Her cousin’s voice goes up too.

“Yeah! It was both red and blue.”

“Did you see him?” He is on the edge of his seat as if Goldi had possibly seen Superman or something.

“No, I didn’t. ” Goldi’s voice goes down a bit.

“Well, you still might. You just have to look up in the sky. “

“I don’t think I’m going to see him. I am scared anyway. ” Goldi puts her head down and talks in a soft tone.

“Don’t be scared. Jet Pack Man is a really nice guy.” Her cousin shows his big wide smile again.

“Well, he is in 6th grade just like me.” Goldi says flapping her hands.

“Yep! That’s right. And you are not scary. ”

“No, I’m not scary!” Goldi says laughing.

“Here keep it. ” He hands the picture back to her. “Then you can always remember what he looks like. Just remember he really is a nice guy.”

Goldi takes it and puts it against her chest.

“Okay, thanks.” She smiles.

“Sure.”

Goldi sketches on a new piece of paper. Her cousin continues on a fresh page too.

A new character was invented, and a simple story to match. One that may live a long time in one’s mind and heart. We don’t know where that sketch is right now. We keep looking. We’ve looked in many places where drawing after drawing is kept. Maybe we should look up in the sky. Maybe…

Thanks Jet Pack Man. For feeding the imagination with a story.

So we fix our eyes not on what is seen, but on what is unseen. Since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18 NIV

Autistic Alphabet

An alphabet of unexpected words to express things about the world of autism.

A is for amazing. There are many autistic people that have amazing gifts and talents. Do you know that there is a guy out there in the world who is autistic who knows the name of thousand stars? And I am sure that you know there WAS autistic person out there that provided evidence for the automatic theory. And there are so many other amazing autistic people out there.

B is for because. Because your child has autism you think before you act. Because you went ahead and did something you thought at first you would not do, your child is better for experience.

C is for communicate. Did you know that there are special ways to get nonverbal autistic people to communicate? Have you seen those tablets that when you press a button, certain words are voiced? Have you ever sung a song so many times or read a story so many times that all of the sudden, they are singing it or saying words from the story too?

D is for Dream. Dream about all the possibilities. Even if they may seem impossible. For you never know . One day, they may be possible. And even if your dreams never come true, the act of dreaming might change your probably nots to maybes. Maybes can keep you going on those dreary days. And when there a lot of maybes, sometimes, there is a dream come true.

E is for everyone. Everyone will at some point in their life, come to meet someone with autism. We are so lucky!

F is for Friend. Everyone needs a friend. Including and especially those with autism. A friend who enjoys their autistic friend, who cares about them, and respects them. And a friend who gets something back from their autistic friend and knows it and wants more of it.

G is for GO! GO on with life. Don’t stop in misery and doubt and fear. Go with your autistic child. and see and do. Go as far as your courage and their courage will take them for the moment. Even if you don’t go past your front door, it is still somewhere. And it is the first step to somewhere else.

H is for Hero. Anyone with autism is a hero. Because they have been given a special purpose in this world that no one else has. It is a battle to fight and even conquer. Because the One who made them is the ultimate hero and He is fighting the battle with them and has already won.

I is for Impossible. Sometimes it is impossible for the autistic person to stop moving or making noise. It is impossible for them to drive through the car wash without going ballistic. It is impossible to get them to eat a spinach leaf. But in whatever seems totally impossible – what may never be- is something else-more possible and even better.

J is for Jump. Yeah, a lot of them jump. The one I know jumps because she is excited. There are all kinds of reasons to be excited. Our girl jumps when she learns that the next day is Christmas Day but she also jumps when she knows that we have marshmallows to put on the hot chocolate or that the parakeet was swinging on his new perch. Big things or small things. There are reasons to jump!

K is for kid. The kid in us will always be with us whether we like it or not. That kid in us stays there for an important reason. If you are like me, I see that kid all too well, when it comes to someone with autism. Especially persons under the age of 18. And we often wish that kid away so that the grown up can hurry up and arrive. Yet, it is the kid, with the energy, youth, imagination, and freshness that makes life feel like a new day over and over again.

L is for learn. Learning is for life. Don’t think that after all these years of raising a child with autism or knowing a child with autism that you have learned all there is to learn. There is more to learn and the teacher isn’t necessarily the more “normal” one – that is you the non autistic one. The learning goes both ways. And so does the teaching.

M is for miracle. They happen each day. The Divine Hand on a day that seems so stormy and black. The Divine hand on the day that seems so ho hum. The Divine Hand on the day that is sunshine and blue sky. On any given day, they happen. Notice them. They happen and will happen in life. Autism does not chase miracles away. They are for that day only and if you don’t notice one, your vision will be blurred to see any others that are sure to happen.

N is for Normal. Normal is totally overrated. It is the label that means most everyone or fitting the standard. “Everything looks normal,” said the doctor when listening to her heart. “Just another normal day – get up, eat, get dressed, go to school, eat dinner, go to bed. Blah Blah in between. When someone is labeled the opposite of normal, don’t think of it as being the death sentence of life because the standard isn’t being met, and that someone is not included in the everybody part- think of it as the path to NEW!

O is for Outside. On the outside, it may look like autism. They might flap. They might pace. They don’t look at you in the eye. They withdrawal. They don’t color in the lines. They may not even comb their hair. But.. that’s just the outside. The outside is NO indication of the treasures hidden inside.

P is for person. Horton knew for sure. We all need to realize and remember what he knew all along. Through thick and thin, he stood strong. A person is a person no matter how small – he said. In other words in the autistic world, a person is a person, no matter how autistic.

Q is for quiet. There are all different kinds of quiet when raising someone with autism. There is at the finally falling asleep kind of quiet. There is the stop yelling and just breathing quiet. There is the warm breeze kissing your face kind of quiet. No matter, quiet is so refreshing.

R is for Remember. Sometimes, yesterday and five minutes ago seem so far away. You wonder if what really happened even did. Maybe it’s not for you to remember. Of course there are things we DO remember. Do you remember when your child was first diagnosed with autism? Do you remember when your child laughed or smiled? Do you remember when you took your child to a public place and something embarrassing or even horrifying happened? Do you remember when you held your child after a meltdown and you felt that they needed your arms around them just by the way they didn’t break loose from your arms? Those are the things to remember!

S- is for sun. Sometimes, it plays hide and seek in the clouds. Sometimes it is hidden by the clouds. Sometimes it is so strong that you wish maybe a cloud or too would appear. No matter, the sun always shines somewhere. When it isn’t shining, look for the sunshine shining in your autistic child. It does shine there somedays just like the sun shines in the sky some days. It could be as simple as a laugh, a smile, or even crying sweet tears. It could be a song they hummed or the time they take your hand and hold it.

T is for time. There will be a time for messy, loud, sadness, and horribleness. There will be a time for neat, soft, happy, and wonderful. Maybe in raising an autistic child, time can only be described as one or the other. But either time, there is a time for it. And it happened for a good reason. So it must have been a good use of time.

U is for understand. We must understand one thing and that one thing is this: You will not understanding everything about autism. There will always be something that will be a mystery.

V is for Voice. They have one and so do you. You might feel you have to be the voice for your autistic child. But they have a voice too. I don’t necessarily mean a loud, articulate one. Maybe it is expressed another way. It could be a smile, a grunt, a moan, a song. We have to make sure they are free to voice a message that needs to be said. If not, there is only silence.

W is for wish. I wish that there was no autism. Or do I really wish this? If our child did not have autism. She would not be who she is. Who she is – zealous, compassionate, creative, energetic, innocent, bright, friendly, – Who she isn’t – normal, logical, developmentally equivalent to her age, an orator, mathematician, typical, – So what I do wish is for our daughter to wish what we wish for- happiness in what could be!

X is for Xenium. I didn’t know this word existed. Maybe you didn’t either. How many words do you know that start with X? I went to the X page in the dictionary. Well, this one means to offer a gift to a stranger. Intriguing to me. Because knowing many autistic children, and raising an autistic child, I have come to see that they offer many gifts to total strangers. And sometimes, they don’t come in a. box and they are given when you least expect it. But they are offered no strings attached. All we have to do is receive them.

Y is for yes. When your child is diagnosed with Autism there are a lot of “no’s”. No, there is no cure. No, there is no one answer for what is the cause. No, You can’t solve all the problems that are going to come along. And for some, it gets even worse, No, your child will never graduate, drive a car, and maybe even talk. No, your child will never live independently. Are there any Yeses in this world of Nos? Why Yes! Yes, your child is a living, breathing, human being with a purpose for being in this world. Yes, they have unique talent that was given to them. Something only they can do. Yes, you are going to see blessings along the hard, rugged, journey. Yes, they are yours and yours to love and yes, in some ways, they are going to love you back. If you think pause and think, there may be more YESES than Nos.

Z is for zealous. I can’t think of any autistic person that I know of that lacks this trait. They jump, flap, spin, sing, shout, cry out, stomp, dance, run, laugh, – need I list more? When I see anyone whom I know is autistic, do any of those things- I think to myself, there is someone who is bound and determine to say “I’m alive!”

Where will she be?

Where will she be? 

When Goldi and her brother were little, and it was too cold or wet outside to play, the two of them would play hide and seek. I was sometimes a little hesitant to let them have free reign of the house. I wasn’t sure what the house would look like in the aftermath of choosing to race around wherever to find the ideal spot to become “invisible”.  Nonetheless, the kids played and played, and the time passed away more happily erasing the complaints of boredom. 

Goldi chose to hide behind doors or under bedspreads. Her brother chose to hide in the cupboard or once inside the dryer! It took a lot of time to finally find her brother. It didn’t take much time to find Goldi. 

Fast forward 10 or so years, and it sort of seems like hide and seek again. If we were to go out looking for Goldi’s brother in the adult world of life, we might find him on a community basketball team and working as a CPA in a reputable accounting firm or maybe as a sports announcer on a major network, or maybe running for Congress. The boy has straight A’s, he’s a jock, and the BMOC.  (Big Man on Campus) The possibilities are endless for him. Maybe he’ll end up selling dryers?  Goldi will graduate most probably with a certificate of completion. She sings in the choir and draws constantly between school and sleep. She has a small circle of friends who will one day wander off into where they will be. So, Goldi in the adult world of life, where would we find her? Will it be in one predictable place because that is the only place a girl like Goldi could be? 

Recently at an IEP, which is the yearly plan for where kids with special needs will be, her goals were discussed. All were related to schoolwork, responsible habits, and being social. All fine and good. But then the matter of her future came up. Her future after she graduated from high school. What were the possibilities? Where would she be? Someone suggested “working in a coffee shop.” 

 Goldi does know how to make coffee. She made some for her dad recently and he said: 

“This is the best cup of coffee I ever had!” 

I couldn’t make coffee if my life depended on it. The last time I made a cup, it was for my grandmother, now years in heaven.  It was too strong, and it spilled over the top. My grandmother drank it anyway, but I am sure she had indigestion afterward. Goldi puts the filter in, measures, scoops, and pours in the right amount of water. A few minutes later, presto! Success! Is working in a coffee shop where she will be? 

I looked into the fuzzy future.  I saw her dressed in a pink cap and apron. She is moving fast but carefully. There is a line of customers wanting their morning fix. She is doing what she has learned to do and can do in her sleep. Filter, coffee beans, water, perk, repeat twenty thousand times. Except maybe a little different, they may need sugar, cream, or frothy or hazelnut or frappe or whatever coffee snobs know and ask for. 

“A coffee shop?” I ponder and sigh. 

“Yes, she is totally employable in a setting like that,” said a staff person. 

That is good that she is employable. But I didn’t expect her being employed in a coffee shop. I find myself dreaming bigger dreams than that. I see her as an artist illustrating children’s stories and writing them too. I see her making cartoon animations. I see her singing in a choir. I see her writing her own music. I see her sharing arts with others with special needs more severe than her own. I see her shining Christ’s light in a weary, sick, world. A coffee shop? I can’t see that in my dreams. But I do have to be realistic. 

“That could be,” I say, “I mean she can make coffee better than I can. And she will earn money. And she will socialize with customers.  “ 

I was still unsettled with that thought. I just wasn’t sure that’s where she will be. 

I can’t say that I am strongly confident of a glorious future.  I can’t even say for sure, that Goldi won’t work in a coffee shop. Being realistic is probably the better way to play this game of hide and seek. This is where she can easily be. It teaches her about life. The job security is endless when it comes to coffee. No doubt she’ll see some that really are satisfied working at a coffee shop. Maybe she would be too? 

But why am I dreaming of something else? Where else could she be? What could she be doing where she feels God smiling at her using the gifts He gave her? Where could she be where she feels like the person God made her to be? If you asked Goldi, she  will tell you where she might be. They range from being a singer, to children’s illustrator, to cartoon animator, to being in plays or musicals, to being an author, to raising parakeets, and this might change tomorrow.   But never, have I ever heard her say “When I grow up, I want to work in a coffee shop.” Nor do I want to hear her say “Okay, I guess I should just work in a coffee shop,” simply because she has been told there is nothing else for her 

Because unlike some who might dream of such an opportunity, she doesn’t. She dreams of something else. And as far as we are concerned, we want her to keep dreaming of possibilities. For all of us have been created on purpose and for a purpose, and with God, all things are possible. Maybe even one of those BIG dreams. 

“Whatever Goldi does,” I finally say, “Whether working in a coffee shop, or making a dream come true, Goldi will not just be one of the employed and contribute to her community.  She will enrich people’s lives with her God given gifts. Just as she does now and will continue to do so. “

There was silence. Then a few nods and an agreeable hum. You know one of those hums that tell you that what you said hit a chord in the heart. 

Where she will be? – She will be doing exactly where God wants her to be, using the gifts that are hers, using them the way only she can, glorifying God in a way that only she can. 

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.

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!