A Poem for Suzanne Wright. A Call To Action; A Call To Be. November 15, 2013
Over the last several days I have watched from the sidelines as the autism community has responded to Suzanne Wright’s Op-Ed piece called “Autism Speaks to Washington – A Call for Action“.
As for me, I have written a poem, one that I hope Ms. Wright might see and read. It is my call to action; a call to be. This is what my son has taught me.
To know him is to sit with him.
To be still.
To sit in the quiet with my sweet boy.
And I am at the computer, my phone next to me on the table.
Speech, OT, outpatient services, his school program.
Not being in the quiet.
Not doing what my child has taught me to do.
And I crave the moments of sitting with him on the couch.
To watch him flap his arms and jump with delight when the caterpillar falls off the truck in Little Einsteins: Our Huge Adventure.
Because these moments.
They are pure.
They fill my soul.
They allow me to experience what he is so extraordinarily good at.
And when the days are hard.
I reach for the stillness.
For the calm.
And it is there.
It is always there.
In the rhythm of all things predictable.
In the blue of his eyes that ease our pain when I repeat the words that he speaks back.
In his grabbing my hand on a cold fall morning when we walk to school
Smoke coming from his lips.
His request as we walk, “Mommy sing Joyful, joyful.”
Oh, his beautiful smile as I begin to sing.
And the days can be hard.
So very, very hard.
They can bring us.
Both of us
To our knees.
Our fists clenched.
Our tears hot.
And then we will find it.
What he has taught us.
What I have learned from him.
The teacher that is my sweet child.
Full of grace.
His spirit guiding us.
We will sit on the couch.
We will turn on the television.
Will put on Little Einsteins: Our Huge Adventure.
I will reach for his hand.
He will hold mine.
I will drink in his smile and giggles as he jumps with delight as the caterpillar falls out of the green truck.
I will feel his warm body as he plops himself next to me when this scene in the video is over.
We will be.
And once again.
I will say, Amen.
Copyright Cheairs Graves November 15, 2013
30 more sleep nights….. October 3, 2013
This is the email that I sent to my family and Dawson’s team of teachers and therapists:
I wanted to send you this picture of Dawson. He made this yesterday in Speech with Shelia! He is so excited about Halloween! Per his request, we have already put our Halloween lights up outside. Margaret-Ann asked him what he wanted to be for Halloween and he said, “Pumpkin, wizard, motorcycle.” She was trying to think of ways of how we could create this costume for him. There was once a time when he did not get Halloween. Now he counts down the days when he can go door to door and say, “Trick or Treat!” And we thank all of your for your hard work, love, and support. Because without you, it would not have happened!
But there is more to the story.
So much more.
His request for the video It’s the Great Pumpkin, Charlie Brown.
His tee hee hees.
Oh, his contagious laugh when he repeats the lines of this special movie.
When Charlie Brown and his crew go door to door to trick or treat.
Checking their bags to see what treat they have received.
And the line, “I got gum. I got a candy bar. I got popcorn.”
Then Charlie Brown says, “I got a rock.”
Yes, my boy knows the lines by heart.
Joyfully, he says the whole script.
And he understands the words.
He gets the humor.
My Dawson giggles when he recites, “I got a rock.”
And with his whole body, he laughs.
And it is night time.
He is snuggled in his purple sleeping bag with his green, white, and blue blankets around him.
I lie next to him.
My hip suffocating several Little People that are dug into my side as I try to nestle closer to my Dawson.
In the dark.
It is where my little — now big — boy opens up to me.
I feel him scrunching his body.
Then his legs moving in excitement.
His breath, “It is Halloween.”
I touch his head, “Well, in 30 more sleep nights, it will be Halloween.”
In the darkness, his smile is there.
His arms flapping and his feet kicking in his big purple bag.
It covers us.
Resting on us.
His voice, “Thirty more sleep nights, then…trick or treat!”
I move closer, “Yes, thirty more sleep nights until trick or treat!”
Then his words.
In their sing-song rhythmic way, “And we get candy and say trick or treat and sit on the steps.”
I lie there.
Breathing in every syllable, “Yes buddy, we can sit on the steps too. Do you like to sit on the steps and give out candy?”
His confident reply, “Yes!”
I nod my head, “Well, we can sit on the steps and give out candy.”
His planning continues, “We will get pumpkin. Where is the knife?”
Now, holding his hand.
I whisper, “Oh, we will need to wait to get the pumpkin and carve it. It is too early to get the pumpkin.”
Not pleased with my answer, he turns his head.
His voice serious, “We will make a jack o’ lantern.”
I hug him, “Oh yes sweetie, we will make a jack o’ lantern.”
This time, my answer soothes him.
His feet kick again.
And we sit in the happiness.
And now, with my girl.
We lie in her bed.
Her princess comforter.
The one she has had since she was two.
It comes to our chins.
She is talking.
Her voice going.
Never stopping,”Mama, watch this!”
She arches her back and kicks her legs.
She propels herself into the air and back down to the bed.
This game continues until I not-so-gently remind her that it is time to go to sleep.
And so she snuggles next to me.
Resting her head on my chest.
Her arms moving above her body.
Because until she is asleep, she does not stop moving.
“Mama, I think Dawson is really excited about Halloween.”
I nod, “Yes, I think he is very excited.”
She sits up, “Mama, I told Dawson that I am going to be a Ninja Warrior for Halloween. Then I asked him what he was going to be.”
I prepare for her to tell me that he did not answer.
That she does not like it that Dawson does not say anything when she asks him a question.
But she smiles, “Mama, you know, he answered me!”
I look in her blue eyes.
The beautiful joy.
“Yeah, he told me he wants to be a pumpkin, wizard, motorcycle.”
I put my lips together, “Hmmm… Now that might be kinda hard to be all three.”
Nowhere close to going to sleep.
Her arms start moving, “I was thinking we could get him a pumpkin costume and then a wizard hat to put on his head and then maybe some motorcycle stickers to put on his pumpkin’s costume.”
She plops herself back down onto the pillow.
Head back onto my chest, “Yeah Mama, that way he can be all three like he wants to be.”
I kiss her still sun-bleached hair.
“Sweetie, that is a great idea. I think he will love that.”
Yes, there was once a time when he did not get Halloween. Now he counts down the days until he can go door to door and say, “Trick or Treat!”
In his pumpkin, wizard, motorcycle costume that his sister has designed.
We will celebrate the season.
Make our jack o’ lantern.
We will all four hold hands.
We will go door to door.
As a family.
We will say Trick or Treat!
Copyright Cheairs Graves, October 2, 2013
1 neon orange ball + 10 pins + my son = bowling September 3, 2013
He has not gone for more than a year.
We don’t know why.
He could not tell us.
We only know that as soon as the tires of the minivan rolled into the parking lot, there would be tears.
He would ask us for this outing.
His way of asking, “Where would you like to go?”
Our response, “I don’t know, where would you like to go?”
His reply, “Bowling.”
And so we would prepare for this family excursion.
But many times.
Too many times.
The steps of getting dressed and putting on his shoes was just too much for him.
The anxiety taking over his large nine-year-old body.
Leaving him with clenched fists and red eyes.
He wanted to go to the place where the brightly colored round balls rolled across the wooden floor.
Where the perfect sphere hit the long objects called pins.
The place where yelling “strike” is cause for celebrations.
He just wanted to go bowling.
And in August his requests became more frequent.
Hiding in his purple sleeping bag with his paci in his mouth, I could hear his words, “Where would you like to go?”
My answer, as always, “I don’t know, where would you like to go?”
Rolling up into a purple cozy ball, his voice, “Bowling.”
But in this hot sticky month, his asking was different.
It was something that I could not put my finger on.
Until I did.
Sitting at a stoplight.
Listening to the radio.
Tapping my thumbs on the steering wheel.
Oh, my gosh.
I know what he is doing.
The child is desensitizing himself so that he can go bowling.
It was a long stoplight, so my celebration with myself continued.
That is it! Good Lordy, that is it! That is why he is making all of the requests for bowling.
Dawson is doing it. He is figuring out what he needs to do to help himself over this hump so that he can go inside and bowl!
My happy dance in the silver minivan did not stop even as the light turned green.
So the requests continued.
And they were hard.
So many attempts ending with my sweet boy crying in the parking lot of the bowling alley.
I still don’t know what.
Was holding his body back.
On Wednesday, August 21, 2013, he arrived home at 5:00 p.m. after his occupational therapy session.
I stood in the front yard talking to his sweet caregiver who had just delivered him home to me.
He grabbed my hand and pushed past me.
“Mommy and Dawson go bowling.”
“Silver car. Go bowling.”
So what do you do when your child requesst to go on an outing at 5 p.m. on a school night and you really need to start thinking about making dinner?
Well, you go.
I yelled to my neighbor across the street, trying to explain my plans and asking her if Mae Mae could stay a little longer over at her house.
I was talking.
Dawson was pulling.
My kind neighbor assuring me that my sweet girl was welcome to stay at their house for as long as needed.
And so my little boy and I were off.
We headed down Route 29.
Crossed over the river.
In its sing-song high-pitched way.
In an octave that told me anxiety was creeping its into my boy’s heart.
“Go to the parking lot.”
His melody whispering that I could respond to his words.
And with careful rhythm I uttered.
“Yes, just to the parking lot.”
I peeked in the rear view mirror.
His eyes were closed.
I watched the road and then peeked again.
His head rested against the window.
His eyelids shut.
He was preparing
The building with the long lanes and bright orange balls awaited his arrival.
And the tires of the minivan turned into the lot.
His breathing stayed steady.
His hands rested in his lap.
I closed my eyes.
I let the air fill my lungs.
I turned around in my seat.
“Okay buddy. We are here. We can just sit in the parking lot.”
His body moved toward the front of the van.
His arms bumped against the captain’s chair.
His fingers reached for the door.
His voice strong.
“Let’s go bowling!”
I took his hand.
The lightness in his steps.
The smile on his face.
His jumping as we walked through the doors.
His body bending over with excitement as I paid for the game.
They told me my son was ready to play.
He kicked off his Crocs and I handed him his bowling shoes.
He pushed his body against me as I leaned down to tie his laces.
His feet galloped to find the neon orange bowling ball.
I chased after him.
Redirecting him as he tried to roll the ball down Lane 26 when we were assigned to Lane 41.
And redirecting him again as he tried to the roll the ball down Lane 35 as we continued our journey to Lane 41.
He sprinted to the magical line of the alley where he could release his ball.
And he threw that round object.
His knees bending.
His arms and hands flapping.
The crash of the pins hitting the wooden floor.
Oh, the beautiful sounds.
Looking for my eyes.
The warmth in my belly spread to my face.
The lightness in my heart stretched to my arms.
I stepped forward.
I hugged him.
“You did it buddy! You did it! I am so proud of you!”
I reached my palm up for a high five.
He met it.
Then quickly he grabbed the ball that had just appeared from the machine.
He hugged it and smiled.
He turned to share his beautiful blue eyes with me again.
And with breathless voice.
“We are bowling!”
And I heard the applause.
The hands clapping from the ones who are not there, but who hold our family.
I felt them.
Around my boy.
Where would you like to go?
I don’t know, where would you like to go?
Yes, sweet boy.
Let me take your hand.
we will mount up with wings like eagles
we will run and not be weary
and we will walk and not faint (Isaiah 40:31)
Let’s go bowling.
Copyright Cheairs Graves, September 1, 2013
To dance in the rain June 7, 2013
He loves the rain.
With open heart, he stands in it.
Tilting his head back.
Scrunching his eyes.
Fingers spread out.
Feet running so fast.
But in one place.
Now bent over.
Arms folded between his knees.
Mommy look at me.
His nine year old body embracing the spirit of one so much younger.
Like a three year old stomping around in the rain for the first time in his rain boots.
My son does the same.
It is the gift he brings to this world.
To dance in the rain.
In the days to come, my Dawson will go to camp. He will be going back to the place that he has gone to for the past two summers. And once again, I am nervous about sending him off. I have written about the impact that camp had in my life. I have typed away about the most sacred place that my little guy attends — a special camp for children with autism.
When we walk through the squeaky screen door, I will hear the counselors call his name. He will most surely run past them as they welcome him with open arms. They will help him find the ball or hula hoop that he has been talking about for the last week as he remembers what he loves to do at camp.
They will hold my son.
And when I sit up at night.
Twisting my hands.
Asking Dave, “Do you think he has fallen asleep yet?”
Or when I tap my thumbs on the kitchen table and with tense voice say,
“I hope they remember not to say anything to him when he gets upset. You know talking only makes it worse.”
Dave will share that he is nervous too.
He will tell me that we can call the camp director in the morning to check and make sure our little guy is doing okay.
And I will breathe.
It is the counselors who make and mold this place on Earth for my son to be.
They rejoice in his scripting.
They sit in his giggles.
They give him space when his anxiety takes over him like a bad summer thunderstorm.
They help my son see his potential.
His innate ability to throw caution to the wind.
To dance in the rain.
They have done this for him in summers past.
They will do it again.
They will hold his hand.
The water will wash over them.
And I will say thank you and Amen.
My little guy jumping in the rain. Reciting from Baby Neptune, “raindrops and puddles”
Copyright Cheairs Graves June 6, 2013
Dawson’s Medley May 9, 2013
At two, there were no words.
And at three.
There were no words.
In the middle.
Between three and nine.
And his words.
They were born.
It is unique.
It is different from other nine year olds who you might happen to meet.
He memorizes lines from Baby Einstein videos.
He gets pronouns mixed up in a hot mess.
He can sing a mean Row Row Row Your Boat or Twinkle Twinkle Little Star.
And when we ask him, “How much do Mommy and Daddy love you?”
His response is always, “More dan da whole wide world.”
Back and forth conversations, they are emerging.
And with every word.
I touch a miracle.
And I will forever say.
Dawson has recently discovered the video camera on my phone.
As I just mentioned, the child loves to sing.
So I give you Dawson’s Medley.
And just know I love it more than the whole wide world!
The seven days of Spring Break April 11, 2013
Dawson and his most awesome caregiver.
Sunday was the last day of Dawson and Mae Mae’s spring break. The plans that I made to visit my parents, well, they didn’t happen. I had it all organized and planned. We would go to my parents’ home in the mountains. I told the kids we would stay three sleep nights, which is the amount of time that works best for my little guy. Leave on Thursday, come back on Sunday. We were set. I would take my little ones to the playground and the indoor pool. We would play in the creek and take a hike to the waterfall. Dave was going to stay behind for work and I had help lined up for Dawson. Our wonderful sitter was going with us to supervise our little man and help keep him safe. I thought I had it in the bag. I was going for it. Other families take trips during spring break. That’s what you do, right?
Then Monday came and knocked on our door. First there was the missing Baby Galileo DVD.
He could not find it.
I turned over every pillow cushion and looked under every bed.
He stripped off his clothes.
I led him to his room.
I gave him his paci.
I piled his blankets around him.
I popped him popcorn.
And in his room he sat.
Because this is what calms my son when he is upset.
Then there was the DVD that skipped. The magical circular object that brings him such peace. Yes, it skipped and his world was rocked once more.
And Monday night, his howls, his screams, his unclothed body curled up on his bed. Dave and I frantically looking for a yellow wooden ball that he wanted. On our bellies, scooting across the floor like army men, looking under his dresser and hope chest, shaking out blankets and shaking them out again.
And the child I gave birth to.
Fist hitting the mattress, he screamed, ”No ball! Where is the ball! No!”
Dave’s and my voices were steady.
Snapping at the man I love.
Sneering at him.
That I had already looked through the blankets.
And my sweet Dawson.
His eyes red.
His cheeks wet.
The unforgiving anxiety and grief over losing that perfect round yellow object.
Then I hear the words from my husband, “Look buddy. Look Dawson. Here is your yellow ball. We found it.”
Dawson grabs the ball.
And breathes, “Yes”
That night Dave and I sit in our bed.
I tell him I can’t do the trip.
All of the reasons come spewing out of my mouth.
What if he won’t go into the bathroom at McDonald’s when we stop? You are the one who can always get him to go. What if he won’t go for me? The air dryers at the rest areas are too loud. What am I going to do if he says he needs to go potty? What if we get to my parents’ and he is upset and wants to come home? I have never done a trip without you. After a day like today I just don’t think I can do it.
Dave touches my hand.
His reassuring voice.
It’s okay if you don’t go.
The trip to see my parents.
And it made me sad.
I watched my Facebook newsfeed.
Pictures popping up of my friends and their children on spring break.
And I wanted what they had.
No, a week.
Just seven days of their typical.
Just 168 hours
Just 10,080 minutes.
Couldn’t I just have a little slice of what they were given?
I reached for it.
I planned for it.
But it was not mine to take.
And so our spring break was at home.
And there were more meltdowns and more tears.
But there were beautiful moments.
For my Dawson there were trips to Target, Walmart, Dick’s Sporting Goods, TJMaxx, JoAnn’s Fabrics, Harris Teeter, and of course the Dollar Tree. These stores, they are his playground. He yearns to go to them like I yearn for the mountains of North Carolina. He plays in them — bouncing balls, exploring toys, finding pinwheels, and eating cookies. He skips and jumps under their lights like my Mae Mae jumps from stone to stone in the creek where my parents live.
And there were the trips to Dairy Queen. Multiples trips to the DQ. Outings with his most beloved caregiver, with me, with Dave, and as a family. His routine of jumping and dancing in front of the freezer that holds the delicious treats made me smile. And his delight in flipping through the cake catalog and bouncing on his knees in the booth as he waited for his large cone to arrive was evidence that ice cream can make you pretty darn happy.
And for my Mae Mae, there were our sweet neighbors, who took her to the children’s museum, and a play date with her most special friend who she has known since she was two years old. She watched My Little Pony videos with her most beloved little puppy sitting in her lap and stayed up way past her bedtime playing the game Sorry with her daddy. She held my hand as we walked downtown and we giggled as we went to get a cupcake from the bakery just after we had just eaten gelato.
And the week ended with Dawson’s baseball game. I shared on Facebook the glorious gift that was given to us on that Saturday afternoon:
And today he played baseball.
And she stood beside him.
Standing in the outfield together she delighted in telling her brother, “Dawson get the ball!! Now throw it!”
And his turn up to bat.
She clapped and cheered. And she took his hand… She tugged.
And they ran the bases together.
And I looked at Dave.
He looked at me.
And I close my eyes and say… Amen.
It was not what I had planned.
It never really ever is.
But the moments.
Filled with sorrow and smiles.
They gave birth to the miracles.
To Mae Mae and Dawson throwing a baseball together in a big green field on warm spring day.
To Dawson uttering the beautiful words, “Move away puppy” when our new little doggie got too close to him.
To sitting around the dinner table as a family and singing the Johnny Appleseed blessing and breathing in Mae Mae’s giggles as we ate our pizza and played the I am Thinking of an Animal game on a cool night.
Our spring break.
Our seven days.
Our 168 hours.
Our 10,080 minutes.
And I thank God for each second that was ours.
Copyright Cheairs Graves April 9, 2013
And his name is Biscuit… March 27, 2013
Facebook status update over at Redefining Typical on Sunday, March 24, 2013:
And we have gotten a puppy…and his name is Biscuit…..after the Biscuit Books…because he knows these stories and loves them…..and his sister thought it would be a great name for the dog because it would “help Dawson with our new puppy…..because mommy he really likes the books about Biscuit”……and after having our new friend for less than one day…..they rest…..and my heart is happy.
I am working out with one of my dear autism mama friends.
I hand her my phone.
You just have to see it. There are no words to describe it. You just have to watch it.
And she watches it again.
Three times in all.
She puts her hands over her heart.
Her eyes tell me that she gets it.
She knows the gift that this puppy is to my boy.
To my girl.
You just have to see it. There are no words to describe it. You just have to watch it.
And you will know.
The gift this puppy is to my boy.
To my girl.
To our family.
Copyright Cheairs Graves March 26, 2013
What will she remember? March 18, 2013
What will she remember?
I just shuffled her off to school.
Her short-sleeve tie dye t-shirt with a black long-sleeve shirt underneath.
Her capri jeans and her heart socks.
Her long hair pushed back with a silver sparkle headband.
Pink puffy coat.
Out the door.
She is gone.
And this morning, like so many other mornings.
There were tears.
Not his, but hers.
It is a ritual at our house.
One that I wish I could break.
Her whining over having to wear a long shirt under her short sleeve shirt.
Her yelps that I am brushing too hard as I attempt to detangle the rat’s nest that has taken over her head during the night hours.
My voice getting louder telling her that she is going to be late.
My patience gone.
Out the door.
As I throw my hands in the air and scream at her to put her coat on.
Moments I wish I could reel back.
And I think.
What will she remember?
And she is tired.
She had a sleepover the night before and her whole body shows she is pooped.
We sit at the dinner table.
Her soft voice.
Mommy, can I sit in your lap?
I hold out my hands.
She puts her knees on my thighs and hoists herself onto my legs.
She puts her head into the crick of my neck.
She places her hand on my back.
Mommy, do you think they can teach Dawson at school not to watch Baby Einstein videos? I don’t like it when he watches those videos. They are for babies.
I take a deep breath.
We have had many conversations in the last few weeks about Dawson’s video choices.
Her anger and embarrassment about his love for these movies have been felt in the pounding of her fists and the sting of her tears.
I touch her hair.
Sweetie, I know that it has to be so confusing that Dawson is older than you and that he likes videos that are made for babies.
It has to feel really strange that he is nine years old and likes Baby Einstein videos and you are seven years old and you don’t want to watch them.
It has to be so confusing.
I feel her warmth on my chest.
Her voice serious.
So, can’t they just help him not watch them? Can’t they just work on that at school?
Sweetie, you know those videos help your brother to feel good. He knows exactly what is going to happen in those videos. They are kinda like your lovies. They make him feel safe.
Her voice is sad.
I know. I know Mama. You have already told me that.
Then a crack in her voice.
Mommy, it is like I am the oldest. It is like Dawson is younger than me and I am the big sister.
The confusion swirling in her head.
I see it.
I know it.
You know, sweetie. It was like that for me too. You know John was older than me, but it was like I was his big sister.
We often talk of my older brother who died when he was sixteen.
I have told her stories about me playing with my brother. Jumping across the wide gully in our backyard and games of ”pickle” with our neighbors.
She knows the love I hold for my brother.
Her body stills.
Mommy, how? How were you like the oldest?
My arms around her.
Well sweetie, you know John had seizures and he also had what is called a Learning Disability. So John kinda had a hard time learning things. Just like Dawson has a hard time learning things.
So because of that, it was like I was the oldest.
Her body begins to relax.
So John had a hard time like Dawson has a hard time.
I rock her in my arms.
Yes, sweetie, yes. Now, John did not have autism, but learning new things was really tricky for him and making friends was really tough for him too.
And you know, I did feel like the oldest in the family just like you feel like the oldest.
And I felt sad and confused sometime like you might feel sad and confused.
Her body begins to wiggle.
She has moved on…
Hey Mama, is it still six more sleep nights until we get our puppy?
Yes Mae Mae, six more sleep nights.
And she begins to dance around the room. Howling and barking like a dog.
Mommy, I am just so excited about getting a dog.
Me too sweetie. Me too.
And what will she remember?
Both. My prayer is both.
Because they do not stand alone.
The mommy loosing her patience.
The mommy holding her sweet girl.
They are one.
But full of love.
May she remember both and know that I love her.
Copyright Cheairs Graves March 18, 2013
Now I lay me March 14, 2013
It is my sacred time with my little boy.
And tonight I lie with him under his green, white, and blue comforters.
His warm hand touches mine.
Mickey Mouse and Minnie Mouse rest between our heads.
And I ask him.
Dawson, should we say our prayers?
His voice reassuring.
And he starts.
But as clear to me as a choir singing Joyful, Joyful.
Now I lay me down to sleep.
I pray the Lord my soul to keep.
Na Na and Pop.
Grammie and Joe Joe.
And the mobile.
And the mobile.
And the cup.
And the apple.
And the sun.
And the balls.
And the mobile.
His prayer fills the space that is his room.
His words cover the toys and pacis that lay on his floor.
And in the stillness that my son has taught me to hold.
And bless all the peoples that needs the help.
Copyright Cheairs Graves March 13, 2013
113th Congress: Don’t let the sequester hurt our children February 28, 2013
yes, these cuts.
they will impact my Dawson.
cuts to special education services.
cuts to services for children and adults with intellectual and developmental disabilities.
that is my child.
the slashes, they mark him.
the red does not come from the pen as you carve away at the budget.
the red comes in the eyes of a mother as she learns that there is no longer funding for her autistic son’s beloved teaching assistant at school.
the red comes on the bended knees of a father who learns that his daughter’s speech services are being cut.
being ripped away as her first words at the age of three are beginning to form.
the red comes in the tears of an elderly parent whose intellectually-disabled adult child’s funding for supportive housing is ripped away.
and with wrinkled hands, she lays her head on the table.
she pulls her wiry gray hair.
and her worst fear is born.
how will I care for my child?
yes, these slices.
they will impact my Dawson.
they will impact your friends.
with the pen.
and I reach out my hands, and say stop.
for my sweet little boy.
Copyright Cheairs Graves Februry 24, 2013
Thinking about them.
When the next one will touch my sweet boy.
There is no “if” it will happen again.
The doctor has told us this.
The next seizure might happen today or five years from now.
But it will happen.
My brother had epilepsy.
Children with autism have a greater chance of having a seizure.
Every seizure you have increases the likelihood that it will occur again.
I know the statistics.
I tucked this knowledge in a little box and hid it far away.
Hoping if I stuck it far enough back in the closet, it would never be discovered.
But like anything that you hide from yourself.
You eventually find it.
Dawson’s seizures have gripped him approximately every nine months.
They last 10 to 15 seconds.
The doctors tell us that the duration is short.
But I see his blue eyes roll back in his head.
I see him shake.
I see him gasp for air when he comes out of its claws.
And the ten seconds move like the slow chimes on an old grandfather clock.
And with every gong.
I hold my child.
With every swing of the pendulum.
He is not with me.
And the duration.
It is long.
Any part of it.
Just too, too long.
Dawson’s last seizure happened in November.
Just a week before Thanksgiving.
And with the last seizure came the question again.
Do we put our son on seizure medication?
EEG, MRI, and EKG.
The tests have come back clear.
No residual impact from the seizures.
The EKG ruled out a heart arrhythmia.
Conversations with the neurologists about medication.
Talks with his pediatrician about meds.
Late night discussions with Dave as we flip through the channels on the television.
Trying to decide.
Not in agreement.
The worry at this point is the trauma to the head from a fall when Dawson has an episode- not the seizure itself.
There has been no loss in language.
No loss in skills.
The loss has been for us.
The ache that there is one more thing for my sweet child.
That these seizures are his and that we cannot give them back.
No exchange allowed.
Seizure medications, they are tricky.
Oh, my Lord, they are so tricky.
The side effects.
They are not good.
Not good at all.
And my little Dawson.
He is that 1% that is going to have the terrible side effects from a drug.
And the times between his episodes are so great that we would not know if the meds we put him on are working or if he had a break-through seizure.
We would have no way of knowing whether to up the medication we put him on or to switch to a different one.
But as the clock begins to chime.
We must decide.
And for now.
A helmet instead.
To wear when he is climbing or swinging.
To protect his head from a fall when a seizure happens again.
Someone by his side when he bathes or swims.
And if the seizures become more frequent.
If they become longer.
We will talk to the doctors
And Dave and I will sit in bed late at night.
Flipping through the TV channels.
Not always agreeing.
Touching hands before falling asleep.
Dave will whisper.
“We will figure it out. I promise we will figure it out.”
And I will wipe away the tears.
Because we will.
We always do.
But for now.
For this moment.
The decision is no medication.
Copyright Cheairs Graves February 24, 2013
The Top 5 reasons why I need some major athletic conditioning to supervise my son who has autism February 9, 2013
I have been busy lately. Doing some major athletic conditioning. You know the type of training that you see on television when they show the football players bending at their knees and running in place. The coach blows the whistle and the padded players jump and turn to their right. The whistle blows again and the players drop to the ground, roll over, and then jump back up. Learning to be on alert. Ready to move, jump, sprint, roll, or dive wherever they need to be for the sake of the team.
Okay, so my athletic conditioning does not look as glamorous as the guys on TV. It does not take place on an open green football field. There are no young athletes standing by my side ready to hit the dirt with me. I don’t have a coach blowing a whistle telling me when or where to turn.
My training takes place in our home. I stand in the kitchen ready to dive, jump, spin, or vault myself into the room that my Dawson occupies, ready to keep him safe or save the room from destruction. A part of my Dawson — a part of his autism — is that he requires a whole heck of a lot of supervision. The type of supervision in which one needs quick reflexes, a loud voice, and a great pair of eyes in the back of your head.
So I came up with a little training list of why I need to be on my A-game for my little guy:
1. I must be able to quickly jump down two flights of stairs and sprint to my bedroom before my Dawson pulls all of my sweaters out of my closet, the magazines from my nightstand, or the vase on the dresser and stuffs them between our bed and the wall.
2. I have to have the ability to climb the same two flights of stairs, taking three steps at a time, and be able to spring off Dawson’s bed to grab crayons and markers from his hand and scream, “No!” to prevent his beautiful artwork from taking over his entire wall.
3. It is a requirement to be able to move in a super stealth mode to the bathroom that he is occupying to prevent him from either putting all of the toilet paper in the toilet or block him from drinking water from the toilet. The taking sips from the toilet water is a new one and is requiring additional push ups to be ready to prevent his head from going into the toilet.
4. Number four is a big one. You need the skill of running in place with your hands in front of you, ready to dash or dive to prevent marbles, Q-tips, paint, Legos, or any other small, random, non-edible object from being put in his mouth.
5. Number five covers all of the other darts and dashes that occur off the field in public places, like Target, Lowes, or a our local grocery store. The maneuvers that are needed to keep him from going out the emergency exit in a store and lunges that must be perfected to prevent him from smelling or licking the apples in the produce section of the super market require that some additional sit-ups are built into exercise regime.
But with all training and conditioning comes the cool down. The time when your heart rate has returned to normal. When you stretch and take in all that your body has just accomplished. The time of day when my sweet little boy snuggles under his blankets with me. When he repeats his most beloved lines from his Little People and Little Einstein videos to me. When he puts his cheek next to mine.
And I know that I am not alone in this training. That He is with me during every spin, sprint, and jump. And I lay my hand on top of my sweet Dawson’s freshly washed hair. I kiss his warm forehead. I whisper, “I love you buddy.” And through the dark I hear him put his lips together. I hear his Mmmmmm and his lips part with a smack. His kissing the night. His, “I love you too.”
From the Top 5 comes the one that cannot be measured or counted. It can’t be found without the intense conditioning. It does not come without the tears and sweat. It is the grace. It is the peace. It is the strength that comes from those intense workouts with my little boy. A gift he gives to me.
And as the stars shine on his ceiling from his Twilight turtle.
I squeeze his hand.
I whisper good night.
And I say thank you.
Copyright Cheairs Graves February 8, 2013
Mommy, can I ride the Polar Express? January 14, 2013
Christmas is over.
Come and gone.
The Christmas lights that make our yard bright and my children smile are down.
The plastic bins that hold the sacred ornaments are now stored with a push and shove into the hall closet.
The music of Baby Einstein videos in the background and my Mae Mae doing handstands and cartwheels across the house are a welcome rhythm that I crave.
Dawson snuggled under his blankets and blowing up balloons and Mae Mae jumping around the kitchen with her lopsided ponytails singing “Firework”.
They are the tradition.
They are what we wait for.
They are the routines of our winter months.
I drive my Mae Mae to Dave’s office to sell Girl Scout cookies.
She is chatting to me about how many boxes of cookies people might buy at Daddy’s office.
We pass by the train tracks.
Just the tracks.
And her voice.
With great seriousness.
With a hopefulness that a child who is seven years and two months holds.
“Mommy, if the Polar Express comes to our house, can I get on?”
My body smiles.
I glance at her in the rear view mirror.
I speak with confidence.
“Of course you can, sweetie. If the Polar Express come to our house then YES you are getting on.”
I feel her smile.
Then I ask her.
“Do you think I can get on too? Do you think they would let grown ups on or do you think just kids can get on the Polar Express?”
The silence in the van.
I know she is thinking hard.
“Oh, yes mama, you can get on. Dawson and Daddy could get on too. We could get on as a family.”
I take one hand off the steering wheel and shake my fist in the air.
“Yes! We can all get on the Polar Express together as a family! That is a great idea!”
Then her voice is serious.
“And Mommy, I can help Dawson. You know, because of his autism, he might have a hard time getting on the train, but I would help him.”
My body smiles again.
“And Mommy, if Dawson had a seizure on the train, I would help him with that too.”
We are coming to a stop light.
My foot on the brake slows us down.
“Mae Mae, you know that you are a good sister. I mean, a really good sister. You show such kindness to your brother. You know that, don’t you?”
I hear no words from my sweet girl’s mouth.
“Mae Mae, did you hear me? You know you are a great sister to your brother. You know I love you. Did you hear me, sweet girl?”
Her voice confident.
“Yes, yes, Mommy. I heard. I am just so excited we might get to go on the Polar Express next Christmas. And I am really excited about selling Girl Scout cookies at Daddy’s office”
“Me too sweetie. Me too.”
And the lights are down.
The ornaments put safely away.
The rhythm that is our January has begun.
And the magic that is Christmas.
The hope and belief that are the Polar Express.
Wrap around my family.
And the train ride begins.
Copyright Cheairs Graves January 13, 2013
No December 15, 2012
my heart fills with sadness
there are no words for a tragedy like this
their running feet
and skipping jumps
no longer on this earth
ten sleep nights before Christmas
the parents…oh my God, the parents…
they have lost what they brought into this world
they were not there
they could not protect them
oh my God, the horror
their children being shot in school
without their mommy or daddy
they could not lean over them and protect them from the bullets
they could not stand up and say, “no, take me”
and it grows dark outside
and the children do not come home from school
their chair at the dinner table — empty
they will not sleep in their bed tonight
because they are gone
and tears fill a nation’s eyes
and the streams weep
and the mountains shake with sadness
on bended knees
we sit with these families
we place our hands on their backs
we squeeze their hands
and we weep
and we say nothing
we are still
and we cry.
December 14, 2012
Copyright Cheairs Graves December 14, 2012
One Beta fish and a whole heck of a lot of fish food December 13, 2012
I have been sad.
Crying in the car as I drive from the gym to the grocery store.
Sitting on the floor in my bedroom with my back against the dresser, knees drawn to my chest, crying.
On the couch next to Dave.
I sit next to him.
And I cry.
Because sometimes it’s too much.
Sometimes I want to run away from it.
I want it to stop being so hard.
I don’t want the heaviness in my chest.
I don’t want the ache of the tears behind my eyes.
I don’t want sadness that comes with the endless lists of things that have to be done for him to be a part of this world.
I don’t want the pain that comes with every number I push on my cell phone to coordinate his care.
I want our elf on the shelf, Elvin, to use his magical Christmas snowflakes to make the sadness to go away.
And a friend comes over.
We sit in the kitchen.
I wrap my hands around my Christmas mug of hot apple cider.
And I cry.
And she listens.
And the magical snowflakes begin to fall.
And I go to the gym to workout with another mom who knows this journey of autism.
And with every huff.
With every puff.
With every bead of sweat.
And we walk to the parking lot.
And I cry.
And her words, “I know Cheairs, I know. Sometimes it’s too much!”
And I feel the tingle of the magical snowflakes on my cheek.
I stare at my phone.
Looking at videos of the kids.
I watch one of my Mae Mae.
The one I took after her brother dumped all of the fish food into her brand new fish tank.
The video she asks me to take of her so that she can help Dawson, “Not to dump all the fish food into my fish tank. Because it makes me angry and sad when he does that. So I want to make a video so he can watch it. And that way he won’t do it again.”
And I smile.
I tilt my head back.
I open my mouth.
I stick out my tongue.
The magical snowflakes.
They warm my skin.
They make me new.
They fill me with hope.
And I watch this video.
And I say.
Copyright Cheairs Graves December 13, 2012
Ten more sleep nights November 14, 2012
Ten more sleep nights.
Just ten more.
And he will be nine years old.
The emotions of looking back and seeing where he has been.
And the fear of where he will be.
Rain down on me like fall leaves.
And I look up.
And there are the leaves that are crumpled.
Falling into a pile that is wet and damp from the rain.
I catch them in my palms and I crinkle them together.
The damp dust staining my hands.
I am filled with memories of where he has not been and choking on the sadness of where he is now.
Then I reach out my hands.
Catching the leaves that are colorful and bright.
A smile on my sweet boy’s face as he counts down the days until his big day.
The touch of his fingers as he pulls me to the computer to show me the toy that he wants from the Baby Shakespeare video.
And the time, it is marked.
Yes, in ten more sleep nights he will be nine years old.
She brings home her assignment from first grade.
To create a timeline.
Marking each year of her life.
I sit down with her at the table.
I read the instructions.
Please help your child record a significant event for each year of their life.
And my throat is too tight.
The tears are too hot.
Because her years are marked by what they should not be marked with.
Her mommy drinking.
Kissing her goodnight with wine on my breath.
Ignoring her pleas to lie down with her.
Because my wine, my sweet friend, was more important than her.
The wine that was choking me.
I picked it before her.
I can’t remember the milestones.
They are a blur.
And they are not wrapped beautifully in a photo album.
They are as cold and as hard as the tiles of our bathroom floor.
I am sick to my stomach because I don’t know.
I just don’t know.
I can’t see the sweet memories for her.
I just see the pain.
The pain of those first years of her life.
Please help your child record a significant event for each year of their life.
Trips with mommy to the grocery store so that she could get her wine.
Being pushed down the wine and beer aisle with her pretty pink bow in her hair.
Please help your child record a significant event for each year of their life.
The long isolated days at home.
Mommy always having to “check on her brother” to make sure he was “okay” — leaving her all alone with her puzzle or picture.
Please help your child record a significant event for each year of their life.
A stark realization at the tender age of two that her brother did not talk like she talked.
And she sits in the bathtub.
Her thirty-month-old voice rings out.
“Mommy, I want Dawson to talk.”
“Sweetie, he can say some words but he can’t talk like you.”
She splashes the water with her hands.
“But I want him to talk.”
“Mae Mae, I want him to talk more too. But he can’t. It is Dawson’s autism. That’s why he can’t talk like you right now.”
Her little two-year-old voice.
“I don’t like Dawson’s autism. Make it go away.”
And I sit next to both of my children in the tub.
My wine in the next room calling my name.
The golden liquid whispers.
Come hither, my friend.
I know it is too much.
Your sweet little girl’s words are too real.
And my Mae Mae splashes the water.
And she sings a two-year-old’s song.
One that she has made up.
“Go away autism. Go away. Go away autism. Go away!”
And I look at her.
But I hear the wine.
I will comfort you.
I will bring you peace.
She finishes her song.
“Mommy, the autism is all gone now. I sang the song. It is all gone now.”
I don’t let myself cry.
I won’t let her see my pain.
I am not supposed to do that.
She cannot know how much I am breaking.
I stand up.
I walk to the kitchen.
And I drink.
But maybe she will remember.
Maybe he will remember.
The summer that Mommy stopped drinking.
Maybe the timeline will be marked with the hot night in July 2009. When she held hands with her mommy at a square dance in the mountains of North Carolina. The feel of two sticky hands intertwined as she promenaded with her mama around the grand circle to the sounds of a fiddle and rustling creek.
Maybe it will be marked with her mommy lying next her at night after she says, “Mommy, I need you. Please lie down with me.”
Maybe a line will be drawn on her timeline. The time that she sat in my lap. The time that we cried together because it was too much. When I held her and she held me and we rode the wave of sadness together.
And maybe, just maybe, it will be marked with a family movie night in the playroom. Blankets, popcorn, Goldfish crackers, and sitting on a couch. The comfort, warmth, and love of being on the sofa together as a family.
In ten more sleep nights he turns nine years old.
And his timeline will be marked.
With the leaves that are faded and moldy.
With the foliage that is bright and full of hope.
Because the lines.
They are marked with both.
And I stand.
Hands in the air.
Catching the leaves.
And I cry.
Because she has taught me.
He has taught me.
Can do both.
With markers, crayons, paints, pens, glitter, and glue.
With smudges, smears, stars, and hearts.
We will mark our lines.
Recording the significant events for each year of her life.
And I will say.
Open shut them October 29, 2012
Our dinner table is set.
I call for the kids to wash their hands.
Dawson scrubs his fingers and palms first and then heads to his room to get his green blankie.
He pulls his large comforter across the cold tile floor and plops himself onto a wooden kitchen chair.
He begins to tug at the blanket so that it is halfway on his lap and halfway draped across his shoulder.
His voice is high, “I need some help.”
Dave walks over to him, “Here, stand up buddy.”
His gentle hands straighten the blanket, “Okay Dawson, now you can sit.”
Dawson’s almost-nine-year-old body falls back into the chair.
Dave has wrapped the blanket around both of Dawson’s shoulders, “You are set. Now wait for Mae Mae to finish washing her hands and then we will say the blessing.”
Mae Mae stands in front of the bathroom sink flipping her hair from side to side.
Her voice is booming, “Where ya think you going baby. Hey! I just met you and this is crazy, but here’s my number so call me maybe.”
I stand next to the bathroom door and say, “Mae sweetie, wash your hands.”
She uses the foaming hand wash and as she scrubs, her seven year old voice rings, “All the other boys try to chase me. But here’s my number so call me maybe”
She dries off her hands and runs to the dinner table.
Before her bottom can touch the wooden chair, she informs us that she needs her blanket too.
She runs to her room to get her twin size princess blanket that she has had since she was two years old; one of the last remaining princess items that she clings to with such honesty and joy.
And now we are seated.
I sit across from Dave and next to my two children wrapped in their dinner blankets.
I look at our table.
Mismatched plates and cups hold the food and drink that will nourish us.
And we ask, “Whose turn is it to say the blessing?”
Mae Mae’s voice booms, “It’s mine. It’s mine. Dawson said it last night.”
I sigh and look at Dave, “Yes, you are correct. Dawson did say it last night. It is your turn.”
She smiles, “I want to do Johnny Apple Seed.”
And with that, Dawson begins the blessing, “Oh, the Lord is good to me…”
Mae Mae’s face scrunches up and she sternly tells her brother, “No Dawson, it is my turn to say the blessing. Now I want to do the Open Shut Them blessing.”
I place my hand on Dawson’s arm, “Dawson, it is Mae Mae’s turn to say the blessing.”
Dave looks at Mae Mae, “Now, do not yell at your brother. He is not trying to take your turn.”
Her voice strong, “But he started to say it.”
My voice, having not an ounce of patience in it, “Mae Mae! Just say the blessing so that we can eat!”
“Open shut them, open shut them, give a little clap, clap, clap.”
She pauses and looks at Dawson.
He stares at her.
He says, “Open shut them, open shut them, give a little clap, clap, clap.”
She smiles, “Go ahead Dawson. What’s next?”
He spreads out his fingers and begins to creep them up his chest.
“Creep ‘em, creep ‘em, creep ’em, creep ’em, right up to your chin, chin, chin.”
His fingers brush the tip of his chin.
Mae Mae finishes, “Open up your little mouth but do not let them in.”
They both quickly close their mouths.
The verse begins again.
And so do they.
And then we bring our hands together and place them at our lips.
I close my eyes.
Mae Mae’s voice sings out, “We thank you Lord for happy hearts, for rain and sunny weather. We thank you Lord for this our food and that we’re all together.”
My eyes still closed.
My hands still at my mouth.
Dawson’s voice, “Amen.”
I open my eyes.
I look at Mae Mae.
Her eyes witness to a glorious miracle.
“Mama. He did it. I let Dawson say part of the blessing and he did it!”
I look at her.
I feel the warmth of her love.
“Mama. I taught him that blessing. I taught it to him! Mama he did it!”
I reach over and touch her hand.
Her body wiggling as she begins to eat the cheese off the top of her spaghetti.
“Sweetie, you helped your brother. I am so proud of you. You did it.”
I look at Dave, “Right. She helped Dawson.”
Their daddy’s eyes are red. He swallows.
“Yes, sweetie. You both did it. I am so proud of both of you.”
And with cheese on the floor.
Milk spilled on the table.
Children wrapped in blankets.
“We thank you Lord for this our food and that we’re all together.”
Copyright Cheairs Graves October 29,2012
Awww, shit… October 25, 2012
This post contains cuss words. Actually one cuss word in particular — SHIT. And this is a post about a mom who has used this word way too many times. And this is a story about a little boy who heard his mom use this word way too much. So he said what she said. And well, shit, this is getting way too confusing. So here, just read the post.
It is a word that has always come spewing out of my mouth.
Drop something on the floor.
Walk into the bathroom to find that Dawson has dumped my contacts in the sink.
Watch in disbelief as Dawson squirts the liquid from his water bottle onto the walls of his room.
Oh shit, Dawson don’t do that!
Stroll into the playroom to find a beautiful painting that Dawson has created on our carpet.
Shit, shit, shit and shit.
You get the idea.
Sometimes life just calls for the word.
And you know, like any good mama, I have tried really hard not to say this word in front of my little Dawson and Mae Mae.
But as it turns out, I have not done a great job at keeping my curse words from the ears of my little ones.
Because things slip out in these moments of contacts dumping, carpet painting, and water bottle squirting.
Dave has always warned me. Before Dawson had words, my husband would say, “You know the first word out of his mouth is going to be shit.”
I would smile, “If that is his first word, then great! I will take it! I will take any word, any word at all.”
Yep, you got it.
Dawson now uses the word SHIT.
Not only does he use the word shit, he also uses it in the appropriate context.
And I must admit that I am really darn proud of him.
He drops his fork on the floor.
And says, “Oh shit!”
He trips over a toy in his room.
Any my sweet boy yells, “Shit!”
He walks down the aisle at the Toys R Us and a box Hot Wheels that he is looking at falls from the shelf.
And he looks his daddy right in the eye.
And with his most glorious words he says, “Oh shit.”
We have tried to redirect him.
Teaching him “Aw shucks!” or “Dagnabbit!”
But he runs into the chair at the kitchen table. He looks at his feet and whispers, “Aw shucks” and then his chin rises from his chest. I see the long brown hair that is covering his eyebrows. And his cheeks rise as his eyes squint with great mischief and he says, “Oh shit!”
And he laughs.
The glorious giggles that tell me he knows he has said something he is not supposed to say.
And I look at him.
My face scrunched up as if I have just licked a lemon as I try desperately not to smile, “Oh, you ran into the chair… Aw shucks.”
He stares at me and in a voice that is as flat as Texas he says, “Aw shucks.”
And then his grin.
And with a voice that is as high as the mountains and as deep as the valleys he says, “Oh shit!”
And he plops himself in his chair.
He takes a bite of his toast.
I yearned for words to come from his mouth.
For him to know the meaning of words.
To use them in context.
And he did it.
And I helped him.
He did what I did.
He imitated me.
Because you know, sometimes life just calls for the word.
And I am forever grateful that it does.
Be sure to check out Heather EO Just Write
Copyright Cheairs Graves October 25, 2012
A Hot Mess: One Miracle-Working Speech Therapist and One Elephant September 21, 2012
Okay, we have been kind of a hot mess here out our house as of late. It you have been following my Facebook updates or some of my posts, you might have noticed that the temperature has been inching up. We have had crying, hitting, and screaming. We have had toys dumped on the floor and sheets, pillows, and comforters stripped off the beds on non-laundry days. The chandeliers have been swung so high that they hit the ceiling . And “Dawson, don’t put that…quarter/paper clip/magic marker in your mouth!” has come from this mama’s lips way too many times.
And we have been trying to douse the flames. Trying desperately to make this hot mess into something that looks more like a cool paradise. Well, maybe a cool paradise is a stretch. But even a stifling summer day in the south with no air conditioning would be better than the hot sand that is blistering our feet as we try to make it to the cool ocean. In the South, you have a front porch and iced lemonade to offer you relief, but at the ocean your feet might get burned before you make it to those cold waves. And as of late, it feels like we are standing in the hot sand and that the ocean is a million miles away.
And once again my son, my Dawson, reminds me that the cool water is there. That the flames are not as high as they look. That with a little help, we can cool things off.
Yesterday afternoon, it was Dawson’s speech therapist who held the hose and was pumping the water. Our Sheila, whose most gentle spirit and contagious energy have lifted my son and our family over the last four years.
Together she and Dawson created.
His bright blue eyes watching her.
Pushing. Pulling. Rolling.
Forming an elephant.
A beautiful long trunk.
And I looked.
With wide eyes.
I could see it.
I could feel it.
That pink elephant.
Round and fat.
Carrying us across that hot sand.
Placing us next to the cool water.
And making the hot mess just a little bit cooler.
Ms. Sheila’s Elephant
Copyright Cheairs Graves September 20, 2012
The One that is Not Mine September 6, 2012
Sometimes I can’t see it.
I really don’t know what it looks like.
But I yearn for it.
And then I am given a peek.
A glimpse of the eight year old little boy who was born on the same day in the same year as mine.
The one who is not my son.
The things that he can do that my child can’t.
The little boy who was brought forth from his mother’s womb .
And I see.
Yes, I see all the things that he can do with such ease.
And then there are the words that spring forth from that little boy’s mouth…
With ease, grace, and speed.
They fill the room.
Woven together tightly into sentences.
Creating ideas. Expressing anger. Sharing fears.
But this child is not mine.
The child who is typical by definition of the world around us.
And I yearn for that little one.
To hold his hand.
To feel what it would be like.
To have him next to me eating at a restaurant.
Smiling. Laughing. Coloring.
To drop him off at a birthday party with a wave and nod.
To watch him kick a goal or score a touchdown.
Yes, sometimes I want the little boy who was born on the same day in the same year as my little one.
Yes, sometimes I want the one who is not mine.
And it is raining outside.
He loves the rain.
He slides his window open.
We gather all of his blankets.
We pull them across the wood floor.
With a giggle, he jumps into his nest.
His elbows and head hitting the mound first, then his knees.
All of the blankets.
The blue one.
The green one.
The white one.
The striped one.
They catch him.
He lifts his head.
“I want pillows!”
It covers me.
I gather his long body pillows.
I drop them one by one on top of his long 70 pound body.
He pushes his nose against the window screen.
Without turning, he calls for the rest of his friends to join him, “I want Mickey, Minnie, and Goofy. Where is Ba Ba and Giraffe?”
I reach down and grab his sacred lovies from the floor.
I step into his nest and he grabs them from me.
He holds them to his chest, and bending down over them, he hugs them tightly.
He looks at me, “Mommy, go sleep.”
I lie next to him.
The smell of my eight year old boy and the warm rain of this September morning become part of his nest too.
He turns from the window.
His blue eyes full of peace.
Full of understanding.
He leans into me.
He grins, “It’s raining.”
I sit up.
I take hold of my sweet boy, along with Mickey, Minnie and Goofy.
I smile, “Yes, it is raining.”
He turns back to the window.
And we sit.
In his nest that cradles us.
And I see it.
The child who was born to me.
Brought forth from my womb.
The one that is mine.
Copyright Cheairs Graves September 6, 2012
The Adventures of Dawson and an Early Dismissal from School August 31, 2012
Dawson and Mae Mae had an unexpected early dismissal from school this past Wednesday. Okay, so we were given 24 hours’ notice that school would end early on August 30th, and like many parents I was scrambling to reorganize my day to put care and support in place for my kiddos.
I was unable to adequately put my Autism Early Dismissal Plan in place satisfactorily. So with lack of additional support in the home and my delusional fantasy that I could maintain order without the use of electronic devices, the following occurred:
Ummm… Yes, that would be all of the toys that he dumped on the floor. The toys that had been so neatly organized in bins on the book shelf. Not good. Not good at all.
Oh, but wait! The adventure continued:
Yes, that is a picture of my bedroom on my blog. A photograph that I would have never thought of putting up in such a public forum, because the bedroom is kind of a sacred place. But sometimes you just gotta put it all out there. So this ambush occurred when our Dawson decided to go into our room and strip off the sheets, comforter, and pillows. The whole kit and caboodle.
To round out the sixty minutes in which all of this bedlam occurred, Dawson single-handedly managed to rearrange our closet and make it a glorious mess. I did not get a photo of this because, well, let’s just say I was not in the mood for any more photo-taking by the time he got to the closet.
I am happy to report that we all survived Dawson’s Early Dismissal from School. After the closet incident, electronic devices were quickly turned on and peace was restored.
As if by magic there was a rhythm, predictability, and calmness that filled our home.
And next time I will not be so stubborn.
I will not fool myself into thinking that I can do it without help.
The help of a neighbor.
An electronic device.
Because I need the help.
Even if it comes in the form of a tablet that has an app for YouTube videos.
So next time my little guy has early dismissal again from school.
The electronic devices will be pulled out with great enthusiasm.
They will ping, ring, and sing through our house.
And I will smile!
Copyright Cheairs Graves August 31, 2012
Three letters – S-A-D August 19, 2012
They sit in my stomach.
On my chest.
I can’t breathe.
They pull the tears out of my eyes.
And two little hands reach to the alphabet blocks.
They pick the letters.
They place them over my heart.
And there they sit.
I don’t want those letters.
They make me itchy.
Like a wool sweater on a hot day in August.
I want to tear them off.
So many reasons for those letters coming together.
Each instant of pain swirls in me.
When I lost him at a gift shop at the beach.
Turning my head away from him for just a second.
And then his face.
Screaming his name.
Running out the front the door of the store.
Bobbing heads up and down the sidewalk.
My Dawson, nowhere.
Knowing that he will not respond to my screeching cries.
The what-if’s still sting my eyes.
The little hand reaches for the letter.
The computer freezing.
Panic in every octave of his scream.
“It’s stuck! It’s stuck!”
His hands slapping my arm.
Trying desperately to fix the electronic device that can bring him great comfort.
Predictability in his life.
And when “It’s stuck!”
The other hand grabs the letter.
A family adventure to ride a train.
Hours of work to prepare him for this outing.
His excitement measured in every stride as he runs to the minivan to head to the station.
His joy seen in his finger tips as he flaps his hands when the train comes to a stop in front of him.
And then his muscles tense.
Pushing away from me.
His body, unable to release him to board the great locomotive.
The sights. The sounds. The unknown.
Too much for him.
I wave goodbye to Dave and Mae Mae who leave on the train.
The separation tearing through my throat.
And Dawson and I drive to meet them on the other side of the mountain.
And two hands grab the last letter.
And it is these three letters…
These are the letters that are crushing me.
And I sit with those letters.
I touch them.
And I cry.
I bend over.
One hand on my stomach.
One hand on my forehead.
The tears running down my cheeks.
It is there.
It flows over me.
And I feel it.
I think of the woman dressed in white who was at the store at the beach.
Her eyes knowing my soul.
Yearning to help.
She found my little Dawson.
Down the street next to a stop sign.
I watch her take his hand and bring him back to me.
Bringing his precious fingers to mine.
And the arms reach for more blocks.
This time four.
And the most sacred letters are placed carefully together.
And Dave quickly comes to my side at the computer.
His voice calm.
He presence next to me giving me strength.
His love for his son felt in every touch of the keyboard.
“There buddy. We fixed it. It’s not broken anymore.”
A smile on Dawson’s face.
A deep breath from my boy’s belly.
And I know my son’s anxiety has passed.
And the hands move quickly to build more.
This time grabbing five blocks.
The letters shining bright.
And Dawson and I head over the mountain to pick up Dave and Mae Mae from the train station.
My little boy grins with delight when I stop at McDonald’s to get him ice cream and french fries.
I see the toothless smile of my girl as she hops off the train.
I drink in her words, “Hey Mama, since Dawson couldn’t get on the train, can we go to that park you were talking about? Can we go together as a family?”
And my shoulders relax watching my children play side by side in the late afternoon at the park.
And I lean against the fireman’s pole that is part of the playset.
I hear my sweet daughter’s words.
And I drink in this precious moment that soothes my soul.
“Together as a family.”
And once more the tiny fingers reach for more blocks.
This time making more than one word.
Placing them carefully together.
Held together so tightly.
And I reach out.
I touch them all.
Because I can feel them all.
I can be with each of them.
They are as much a part of me as every breath I take.
And the little hands reach for the last blocks.
And I close my eyes,
I wrap those five letters around me.
I let them hold me.
I feel their warmth.
And I feel it.
The Peace of God that surpasses all understanding.
And I say.
Copyright Cheairs Graves August 18, 2012
Don’t forget to check out Heather at the EO Just Write.
Activity Sheet Number 55 July 31, 2012
If you read my last post, then you know I have been doing a little summer cleaning. I came across another little treasure.
Activity Sheet 55-Being A Friend
In the space below draw one of your friends. Then list three things you really like about that friend.
Three things I really like about my friend.
1. She likes to play.
3. She is my sister.
Yes, he drew a picture of his sister, Margaret-Ann a.k.a. Mae Mae. And yes, this one is getting framed!
Copyright Cheairs Graves @August 31, 2012
It’s been over 30 days July 30, 2012
It’s been over thrity days since we took our little guy to camp.
A special place nestled in a valley.
A camp for children who have autism.
With counselors who should stand high on a podium and have gold medals placed around their necks.
A camp where laughter runs through the creek.
Where reciting verses from Baby Einstein videos is the norm, and flapping arms and high pitched squeals are embraced.
A village where my son walked through the squeaky screen doors and was greeted with the words that every camper yearns to hear when they go back to camp, “Hey! Look! It’s Dawson! We are so happy you’re back!”
A magical kingdom where counselors smiled as he jumped like a frog around the lodge waiting for his turn to see the nurse.
A place where I looked at other parents.
The way they gently pointed to an icon on a board or softly spoke one or two words to their child.
And I knew.
Yes, I knew.
That these parents were My People.
Yes, it has been thirty days since Dawson went to camp.
And as I sit on the floor sorting through papers that have been piling up on our dining room table for this last month, I come across Dawson’s Daily Camp Notes. And like finding an old photo album stuck in the back of a closet, I slowly begin to turn the pages that bring back Dawson’s week at camp.
June 12, 2012
We enjoy every bit of Dawson! But especially his smile! He has one of those contagious smiles. So that when he is smiling everyone around him is too!
Dawson really enjoyed song time again today. One of his favorite songs was sung, “Baby Bumblebee.” He held onto his bumblebee through the entire song (don’t worry they were not real bees).
My favorite time with Dawson today was his greeting after naptime. When I went back to get him at the group lodge he had a huge smile on his face and said, “It’s Sarah!” Favorite moment all week!
The firetruck came today and Dawson had great time checking out the hoses and getting in the front of the cabin with all of the other campers. He was really interested in all the knobs and levers trying to figure out what everything did! Then Dawson had a yummy bowl of ice cream!
And I think back.
To thirty days gone past.
To Dawson’s last day of camp.
When I heard his counselor read…
Dawson wins the Jack Of All Trades Award for his stellar performance in activities this week! He is a justified jump roper, a brilliant beach baller, a super sweetheart, a basketball bouncer, and a music master! Dawson is truly an amazing camper and we all wish he could stay all summer long.
And I remember my Dawson grabbing his award and running over to the ceiling fans.
My memory of dashing after him fresh in my mind.
My arms still feeling the brief hug he allowed me to give him before he darted off to try and play the piano.
My voice coaxing him to come and sit with me on the floor.
The weight of his seventy pound body sitting in my lap.
And the peace.
I felt it in my little boy.
I felt it in that room.
And there is no other word to describe it
Copyright Cheairs Graves July 28, 2012