Destination: Next.

(Photo credit: Patricia Fuller)

by Sarena James

I’m here. Don’t really remember the entire drive here though. I do remember setting the Waze map to the destination of this school.

Yes, I’ve been here countless times before, but I knew the relay-race of thoughts in my mind of the unknown might prove hugely distracting from what I knew.

“In two and a quarter miles, make a left turn.”

Grant is going to middle school.

Unboxing Blooms

by Sarena James

A few groceries. That’s what I went in for. That’s what I thought I was getting. That’s what I had enough time for anyway. Potatoes, grapes, juice, and a few things more. Go in. Come out. That was the uninterrupted plan. There were long lines. (Holiday weekends ensure that.) But one line had just one person in front of me. So I steered my cart in that direction. It shouldn’t take too long.

Then, I saw him. “D.” He looked directly at me and waved to me. There he was, and in a sea of people, he saw me. A kind gentleman, always. Highly observant, always. Meticulous in his method of bagging groceries, always. “D” saw me and waved, and in my mind that was enough for me to move my grocery cart from the shortest line to the longest line.

Autism Awareness: 24/7 365

by Sarena James

April is Autism Awareness month. A time when the complex disorder and the multiple families affected by it, are boldly highlighted in blue.

Stories are swapped and shared in an effort to gain strength. I get emails. I get speaking engagements. I get phone calls. I get articles to read. I get tired. Today, just tired.

The last time I was unaware of autism was nine years ago. Completely unaware. I’d heard of it before but there was no reason for its definition to stick in my mind. I knew no one with it, not even a passing stranger in the memory of mind. Autism? Echo, echo, echo.

Gray Areas: Finding Clarity

by Sarena James

If you’re taller than Grant then you’ve probably noticed two things. One, you won’t be taller much longer, he’s hit another growth spurt and the shorts he now wears were last week’s pants. Secondly, he has lots of gray hair. Yep. At ten, he’s steadily going gray. He’s still our Grant and for us it was just another unique thing about him adding to our ever-growing list. But for him, it’s become something that’s made him spend much more time in the mirror every morning fueling his already peculiar fascination with hair. Grant has been changing his hairstyles a lot over the years, at his request. He’s grown his hair out for Afros and funky Mohawks. He’s worn twists and low-top fades with fine-lined parts. If there is one thing he loves and finds intriguing about himself, it’s his hair and its versatility, and we love that about him. 

Finding Light: Embracing the Uniqueness in Each of Us

 by Sarena James

Sarena, Raphael and Grant at The 2017 Beaux Affair

There’s a certain soundtrack that often accompanies our journey. A soundtrack spontaneously recorded by passersby who don’t know our story.

Gospel Singer Takes The Time To “Stand” On Aisle 9

by Sarena James

      There’s a certain goodness that is visibly present on an aisle where perspective, understanding, and sensitivity are shelved in abundance. On that aisle there is an unmistakable willingness to hear a persons heart and a sincere attempt to walk in their shoes, as uncomfortable and unsteady as it may be.

     On that aisle, the shared dialogue is rich in experience that enlightens and lifts the heaviness with a hope that heals. That’s what happens on aisle 9, and that’s exactly what happened when gospel recording artist Donnie McClurkin wholeheartedly agreed to meet us there. 

Dear 2009

by Sarena James

Dear 2009,  I wish you could read this now. I know how very much you need to read this now, but it’s taken time to write it. What can anyone really say to you in this moment to make you believe it’s going to be alright; make you believe he’s going to be alright. You are the year that has to tell a loving father and mother that their only son has autism, and it will be absolutely devastating to them.

Grant, Mr. Glenn and the Harley

by Sarena James

I suppose if I were an eight-year old boy, I’d too be fascinated with and overjoyed by the mud puddles left by the rain. (Grant please take your shoes off before coming back in the house and wash your hands and legs, and arms, and face… never mind. Bath-time!) Maybe I’d be adventurous and try to climb a fence in an effort to sit closer to the sky. (Grant please get down so you don’t fall.) Or perhaps it would be the sight and vroom-vroom sound of a motorcycle that would broaden the smile on my face. (Grant if you insist on staring at the neighbors motorcycle, please speak to him too.)

Conversation Peace

by Raphael James

“Stop whining!”

“Clean up your room.”

“Stop screaming! Look for it, yourself!”

I realized this weekend that for too long, these one way conversations have been the only communication that I’ve had with my son, Grant.

A Terrific Kid Named Grant

Terrific Kid Award

by Sarena James

As with any given journey, forward movement places some scenes in the rear view mirror. It is impossible to move ahead without the scene in the background changing, reminding us of what we’ve passed by or been through.  At times the glimpse of beauty we see in front of us, is what drives us, and motivates us, and fuels us to keep going.  For four years now, we’ve been travelling with Grant holding a map with destinations marked by hope and hard work.

A Sunday Prayer

by Sarena James

Today presented one of those mornings. One of those mornings that would put me at home navigating on a sea of emotions with the son, struggling to shine. He threw things in frustration. Screamed in place of words. 

Until The Wheels Come Off

by Sarena James

I have never been the mother of an autistic child who is seven. Seven is not six, or five or even four, and it’s certainly not three, around the age my son was diagnosed. No, seven is different.  Seven is more active. Seven is thirstier and intentionally searching for what makes the world go ‘round.

Holly Robinson Peete takes on Rap Artists…Again

Holly Robinson Peete, autism advocate takes on entertainers. “Autism” will not become the “R” word.

Beating the dol-Drums

It’s that time of year that parents and children look forward to, Summer Break! And one week into it we’re ready to send them all back to school.

Direct Son-Light

Sometimes I feel as though I’m looking at my son through the blinds; my blinds. It’s a filtered light that  doesn’t fully expose what’s there.

Awareness of Autism: Why Hope Is Stronger Than The Disorder

2013 Autism Awareness

I hate autism. I hate the audacity and gall of this disorder to rob innocent beating hearts of social skills and fluent language. 

The Thing About Goodbye…

by Sarena James

Yes, I’d already spent time with this day, but nothing but being in the actual moment could have brought such a realness of emotions.

There’s Hope!

by Raphael James

© 2013 Jaydn James Photography

This has not been the school year that we anticipated it would be.  My little man is growing up. He’s getting bigger…stronger.

His tantrums have escalated instead of tapering off like we had prayed they would.  Language has come bursting through, and we’re eternally grateful for that, however navigating through his storms of spontaneous rage has been taxing on everyone at home and at school.

School.  He hasn’t been kicked out of his school, but it seems they have taken him as far as he can go. We’ve had to admit that maybe this isn’t the best placement for him. BUT there’s HOPE…

Presidential Questions

Today is President’s Day a time where our country reflects and respects the highest elected office in the land.  We asked ourselves, if we could ask President Barack Obama any question concerning our children with special needs what would that question be?

Finding Comfort In The Storm

In all of my life I can’t say that I’ve ever been comforted by a storm, comforted in a storm, yes. It’s been raining on and off for several days now, and last night, sleep wouldn’t come easy; it didn’t come at all.  

I’d been uneasy for months now, about the unfair changes and challenges and chaos concerning my son. Thoughts of him transitioning to yet another school, with new teachers and therapists and strategies and techniques, all with the hope that this time he would be in the right soil and climate to grow.

Autistic Man Told Not to Come Back Inside Store Without A Leash

Dog leash (Photo credit: Wikipedia)

These are the kinds of stories that you scratch your head and say did that really just happen?

   Did that security guard just imply that a man with special needs was an animal?

Dear 2012

Dear 2012,

Today is the last day we will spend together. It is impossible to have been with you for three hundred sixty-five days and not developed some feelings about you. I thank you for trusting me to speak when 2011 wouldn’t, couldn’t. I thank you for opening up doors when in years past there wasn’t even a door frame.

Setting The Media Straight About Autism

Since the media began to mention that the Sandy Hook Elementary School shooter may have had autism; parents, doctors, and other advocates  have all rallied to dispel the notion that autism played a role in the tragedy.  It is essential that you help spread the word to others that autism does not lead to cold calculated murder.

Vodpod videos no longer available.

AUTISM Did Not Kill Those Children

candle, candle in glass (Photo credit: Wikipedia)

Our hearts go out to the families of all of those affected by the senseless acts of a murderer.  The slaughter of innocent children is inexcusable.  The fact that it happened in a place of learning and shelter is despicable.  As more information comes out about the Newtown, CT killings and the person responsible I fear that there will be more unintended victims in the wake of this tragedy…those who have been diagnosed with autism.

Living With Autism: Dr. Temple Grandin

Vodpod videos no longer available.

Best selling author, industrial design expert,  and autism advocate Dr. Temple Grandin sat down to do a one on one interview with Raphael James.

Autism: Controversial Methods of Managing Behaviors

This online article from ABC News is very interesting. It details what happens when students throw tantrums and get out of control. Hold restraints, secluded rooms with padded walls and in some places a form of shock therapy.

Those who have witnessed severe tantrums know that children can sometimes get violent and become a danger to himself and others.  The measures can be seen by some as cruel and barbaric. Others say it doesn’t curb the bad behavior, but rather intensifies it.

There has to be another way. What is a cool down effect that has worked for you?

Related articles

• Which Congressman Is Blocking Bill That Would Protect Kids with Autism? (abcnews.go.com)
• Parents angry over school district’s use of ‘isolation booth’ (prisonmovement.wordpress.com)

 

Onaisle9.com Founder Named One of 2012’s Women To Watch

Recently, Sarena James was honored as one of the Summerville Journal Scene’s 2012 Women To Watch. The publication chose 10 women who were actively involved  in their communities. Below is a video of Sarena’s acceptance speech.

 

 

 

“Back Talk”

Sarena James

The first time I told my son to do something and he said, “No,” I turned my back on him for one second and for one reason: I didn’t want him to see the slight smile on my face.

A New Way to Worship: Addressing the Special Needs Family

Beauty in worship (Photo credit: Wikipedia)

We have noticed some churches with larger congregations have gone out of their way to address these needs.  Does the size of the organization matter? Are larger congregations more financially able to handle the task?  Should the church or worship house even TRY to take on such a herculean challenge?

When You Assume…

In a world where things are seldom as they seem, none of us can really afford to assume anything.

I recently wrote an article for http://www.goodenoughmother.com on assumptions.

You know what happens when you assume?

You cheat yourself out of an opportunity to grow relationships. You deprive yourself of the chance to see beyond the exterior and find the true goodness at the core. When we make negative assessments of others we really shortchange ourselves.

We all do it from time to time, but have you ever been embarrassed by one of your assumptions? What happened? How did you correct the situation?

 

 

VIDEO: Blissful Dreams at Stardust Farms

Recently, my family was invited to Huger, SC where Grant would experience Horse Therapy. We had heard of the wonderful benefits of that come from the interaction with the animals but we got to experience it first hand.

Walk On: The Story of Grant and Godfrey

“He’s not going to do it.”

by Sarena and Raphael James

He’s not going to do it. That’s what the fear in his eyes said. That’s what the uncertainty in his rapid heartbeat said. His feet backed up those sentiments, literally. From a cautious distance he pointed, unsure of what lay ahead. There in the middle of the green stable stood an animal that before this moment was only real in his pop-up picture books, or a plastic figurine in the bottom of the toy box made alive by his imagination.

Seeing With God’s Eyes

Clouds-8 (Photo credit: Wikipedia)

I have often wondered why God allowed Autism to come into my family. Friends and family have tried to offer consolation with phrases like, “God gave him to you because you are strong enough to handle it.” Or “God is too wise to make a mistake.” Those things may be true, but they don’t make the struggle any easier.

They don’t make watching my child suffer through rage and confusion any more tolerable.  But this web entry did help me.  Vineyard Community Church Augusta › When weakness is a blessing What the author says rings true to me. This journey has taught me to look at the world through God’s eyes.

Thank you Amy Parrish Key for sharing this with us. I have much more to say on this, but later.

-Raphael

Teacher Slaps Special Ed Student Keeps Job

NJ.com : N.J. teacher who slapped unruly special education student will keep job http://mobile.nj.com/advnj/pm_29221/contentdetail.htm?contentguid=jUBGQNov

It’s Questionable

In Search of Happy…

by Sarena James

The note in his green book bag said that Grant was selected by his teachers as the Terrific Kid of the Month, for April.  My mommy heart smiled genuinely, as I thought of everything that made my son terrific.

Father Sends Autistic Son To School Wearing a Wire; Disgusted By What He Heard

A story from the Huffington Post feeds every parents nightmare, it will break your heart. A father was getting reports that his autistic son was becoming increasingly violent in school. Puzzled by it, the father finally put a recording device on the child and sent him to school. What he heard in that six hours of audio compelled him to post a video on YouTube.

It’s Question-able

Special Needs Challenges in Social Situations

We’ve written here before about how parents of special needs children can often feel as if they’ve been sentenced to confinement. Many times that child’s physical challenges make it nearly impossible to interact in a social event.  Those brave enough to risk embarrassment and humiliation, sometimes get just that for their efforts when they go out to eat at a restaurant.

May I Have a Few Words With You, Please?

by Sarena James

How amazed would you be and how much applause would you give to a seven-month-old who could speak more than five hundred words accurately and use those words in the correct context?  And what joy would you have if that same seven-month old could hold short conversations with you and tell you on most days what they wanted for dinner or where they wanted to go like, on an “adventure downtown.”  If that seven-month-old could tell you that they hurt their knee and could ask for a band-aid that would be nearly phenomenal.  Imagine all of that at only seven months old.  For us, that is exactly how it is.

a-b-c-d-IEP…..

by Raphael James

People go to school to become many things…doctors, lawyers, scientists, teachers.  But I have yet to meet the person who went to school with the goal of becoming parent to a child with special needs.

When A Child Speaks Up

by Sarena James

 

Before a week ago, I could think of nothing that a five-year old could say to make me cry; but she said something about my son, and I cried.

Three years later…

by Sarena James

March 2009. There is a distinct photograph that hangs on the wall of my mind and when I close my eyes, I picture it clearly.  I remember the psychologist’s office with the beautifully upholstered chairs. I remember the comfortable couch lined with tasselled throw-pillows. I remember the sudden collapse of every dream I had for our son, at the sound of one word, autism.  

“Stop It”: The Start of Something New

by Sarena James

 

In my head I’ve thought of a thousand different scenarios of what it would be like when my son voluntarily addressed his peers.

What Is Autism?

Image via Wikipedia

Often I’m asked to explain autism. I feel I muddle my way through it and give the basics, but because the autism spectrum is so wide it’s very difficult to sum it up neatly.  What autism is to me and the way it affects my family, may not affect your family in the same way.  Thanks to Autism Speaks  for this article entitled “What Is Autism” that seems to easily find the words that I struggle with.

-Raphael

Cute Baby, Disorder, Still My Brother

Editor’s Note:  Through a class assignment “A Six Word Memoir”, our oldest child Jaydn decided to pour out on paper her thoughts concerning her younger brother’s journey with autism.  We thought it was beautiful and asked if she wouldn’t mind sharing it On Aisle 9.

 They play together, they laugh, sing and study. Six years separates them…little else does.

by Jaydn James

My brother, Grant, is five and has autism.

He can’t talk. But, that doesn’t mean he’s not part of the family. 

He can still play, write, and draw.

A Grandmother’s Heart

I never asked her how she felt. I never asked my mother what it was like to have a grandson diagnosed with autism. Nearly three years later…I know. A few days ago she shared the thoughts of her heart, and with her blessings I share them with you.  -Sarena

 

by Dr. Marilyn Chipman

The phone rang.          

          “Mom!  It’s a boy!”

          “Are you quite sure?” I asked.

          “Oh, yes!  We’re just leaving the doctor’s office and we saw the sonogram.  There’s not even a shred of doubt.   I’m pregnant with our son!!”

 

Listening As Time Talks

Time Will Tell

“When you decide to tell your story, tell it in truth. Tell about the hurt, tell about the pain, tell about the times when hope was missing. Be real, be transparent, be the one willing to help someone else, out. No, not every story will have a microphone or an applauding audience seated to capacity. Rather some stories are told to the listening ears of one. But if you can help even one, your struggle is not in vain.” Sarena James, October 17, 2011

I remember when silence was the loudest noise I heard from him; the painful sound of wordlessness was much louder than his cries.

Making The Effort

by Raphael James

“Marco” she called.

“Polo”, I responded.

SMACK! Her hand found the top of my head with great ease in the quickest game of Marco Polo that the world of water sports has ever seen. Being named Marco Polo Champ in a very tiny pool may not be such a big deal. But playing and splashing with her brother who has been diagnosed with autism and hates having water over his head…THAT is monumental.

Why Should I Attend A Special Needs Conference?

Image via Wikipedia

 

“The truth is, most doctors can diagnose our kids, but they simply don’t have any other solutions or what to DO with our kids other than speech, occupational or physical therapy, or meds.  It is up to the parent to read, to attend conferences, to LEARN about what method (s) will work best for THEIR kid”.  Katrina Laygo, Editor of “Something Special Magazine” 

If you are available this weekend September 17, the 2011 Savannah Autism Conference will be taking place at Memorial Medical Center in Savannah, Georgia. Registration for the event is $60 per person and RESPITE CARE is provided for children by trained professionals for a small fee.  Is this conference for you?

Free Autism consortium