All posts by bearfamily4

About bearfamily4

"Goldi" is my autistic daughter. She gets her nickname from the story Goldilocks and the Three Bears. Not only does she have golden hair but with it her autism begs for things to be just right. This is her way.

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!”

Hiding in a folder and buried underneath stacks of other folders, there are drawings. Goldi has made so many pictures since she first decided that drawing was her thing. Something that made her feel calm, happy, and excited all at once. There is a pictures of characters, animals, and even a snow globe. These are drawings she had done while she watched Draw so Cute or Art Hub. So many pictures. One of a Saint Patricks Day Taco, a Spooky Spaghetti, a hundred princesses, cute animals, and scenes of each season. Some I’ve seen but most I haven’t Including the one that I find near the bottom of the stack.

Me. I see written on the top of a black and white drawn picture. I hold this picture in my hand for some time.

I see a girl straight and tall with hair tied up in a bow and eyelashes that curled at the tips. She is smiling but not too much. She wears a cute dress with a little flower and a slight ruffle at the bottom. She is standing alone but she stands with confidence that she really isn’t alone.

Who is this? You might wonder.

I can almost hear the girl in the picture whisper “Me”.

A cute girl. A happy girl. A girlie girl. A girl who has a secret to tell.

“Me” says a voice. “Me”. That is all that you need to know.

Everyday Goldi draws almost like she is keeping a journal. Each drawing captures her moment of fun and wonder. Sometimes it’s something wacky. Like the Saint Patricks Day Taco or a Spooky Spaghetti? But whacky is in to Gold. She laughs and says

“TADA!” when she presents her newest drawing that she drew while watching the Art Hub guy.

“Isn’t she so cute?” she says as she shows me a little summer girl or another princess from Draw so Cute. Just right for someone who is learning to draw t all the fine lines and daintiness and things that make us smile.

“Art Hub just came out with a new drawing!” she announces.

“What is it this time?’ I ask.

“How to draw a vampire doughnut!” she says laughing.

“What?” I say, “What in the world to Vampires have to do with doughnuts?”

Goldi doesn’t answer. She just wants to draw it. Drawing it helps her makes sense out of the things that don’t. Drawing it, is like getting into someone else’s imagination for awhile and it feeds her own.

“Iv’e got to draw the Unicorn Girl, she shares.

“Can I see it when you are finished?” I ask wondering if that means a unicorn who happens to be a girl or a girl who has a horn like a unicorn OR-

“We’ll see” she says.

I see her drawing with pen in hand, listening to the soft voiced girl on the computer. She turns it off once the sketch is done and adds color all on her own. Then she folds it up and puts it in her folder.

Sometimes, she is drawing and I don’t know it. She is in her room. It’s quiet. She is there for a long time. Sometimes I wonder if she has fallen asleep. But not in broad daylight. The door is locked so I can’t peek on what secret she is hiding. I bring my ear to the door and I hear nothing but a her breathing and a her chair creak.

Then, when Goldi isn’t home. I sneak into her room. I leaf through all the pictures. I try to not to leave a visible fingerprint. Goldi has hidden many of her drawings. It’s like a bunch of secretes she stores up safely for a time when she chooses to reveal them. Or not.

I find the picture. It’s not a Draw so Cute one. Nor is it a wacky Art Hub one. It is Goldi one. It’s Goldi herself. The way she wants to daw herself. The way she sees herself. The way God created her to draw herself. The way she images her Creator.

“Me” she says.

All on her own, she drew. Maybe with a little cute and a little wacky But “Me” just the same. Just ME!

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.

An Unplanned Anniversary

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

“It’s a snow day!” I tell her.

“Oh,” she says softly, looking down.

“Are you sad?”

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

“Probably,” I answer.

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

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

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

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

“You’re right.” I answer.

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

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

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

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

“No. Just white. ”

Goldi’s eyes get big.

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

Do you think we got out our computers? “

They shake their heads.

“How about our video games or tablets?”

They shrug their shoulders.

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

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

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

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

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

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

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

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

“Where are you going?” I ask.

“Outside!” they both say in unison.

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

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

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

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


Two weeks ago, Once upon a time….

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

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

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

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

“Really?”

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

“How does Annie know this?”

Suddenly I sound like a detective.

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

“Really, Mr. Brown did?”

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

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

“So when did he go skiing then?”

“Probably about two weeks ago!” Goldi insists.

Two weeks ago it was 30 something degrees.

I sigh.

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

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

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

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

Goldi laughs heartily.

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

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

“Yeah!” said Goldi smiling and giggling.

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

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

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

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

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

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

“In the beginning, God” Genesis 1:1

“In the beginning was the Word” John 1

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

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

N

Covid Cornucopia

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

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

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

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

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

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

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

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

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

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

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

I am thankful for this sunny day. I wrote.

I am thankful for steak! said her brother.

I am thankful for this house. said my husband.

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

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

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

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

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

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

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

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

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

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

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

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

Golid came in

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

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

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

I am thankful for warm bed. I wrote.

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

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

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

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

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

“Okay.” I said

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

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

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

I am thankful for my family. I wrote.

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

“Okay. ”

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

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

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

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

I am thankful for the fruit jelly. Brother wrote.

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

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

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

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

A Just Right Girl

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

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

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

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

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

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

Quiet the Questioning

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

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

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

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

“School is closed because of the coronavirus.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

His understanding is unsearchable. Isaih 40:28

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