Showing posts with label Hope. Show all posts
Showing posts with label Hope. Show all posts

Wednesday, May 4, 2011

The Tone

As we got out of the car, Blue said he needed to ask Larry & I a couple questions. We both recognized "the tone" and turned immediately to him.

He said, "Am I Autistic?", all the while never breaking eye contact with the two of us.

As I've left Autism an anytime open discussion, I said, "You have Autism, yes. Why do you ask?"

An aftercare provider told him that he wasn't "truly" Autistic.

There are many positives in Blue & I moving back to south Arkansas. One of those is without a doubt his step-dad, Larry, our protector and defender, my best friend. Our families, our church family which included friends, extended family and teachers. Yet another is having been raised around many of his school staff and knowing them in sports and grocery stores.

He values consistency, structure & truth.

He respects those that say what they mean and mean what they say. If a trusted person makes a statement to him, he takes it as concrete truth until it clashes with everything he has been told by his constant truths, his Mom and Larry.

Imagine how badly you hate being lied to. Now imagine that multiplied by a gazillion because in Blue's eyes, there is only black & white-no grey-no room for error. One of his constant, consistent measures of judging a person's worth (other than his innate, immediate clarity of their measure), is their ability to tell the truth.

Last night was painful. It was horrible. It was full of frustration. It was cloaked in anger. It gave Blue pause to wonder if everyone that speaks to him is lying. Again. It ripped a tiny piece of my heart apart for him. Again.

There are many contradictions, many ironies, many things that do not add up in the world of an 
high functioning Autistic (HFA) child. He nor I chose for him to be this way. We didn't chose to spend hours upon hours in speech and occupation therapies, at Dennis Developmental Center, UAMS/Strive or Child Study Center. We didn't choose for loud noises to bring him to his knees in agony, for Wal Mart to set off every internal alarm he has with it's unorganized chaos.

What parent would choose for their social lines to blur, for him to get into peoples' space without realizing he is overwhelming them? His rages, laughter, pain, truths...are dealt with in his way, not the way others deal with or perceive them. He grows better at realizing the lines, but still yet, it doesn't make him right or others wrong. What people view as spoilt, hateful, disrespectful...isn't always exactly the way they see it.

Each day life is a struggle in many areas for him. His social interaction and peer relations develop daily,  often behind the schedule set forth by education experts and doctors. Yes. He is aware that he lags in some areas while realizing that his intellect is sky high. He sees the look in some eyes that tell him he is annoying, frustrating and pushing the envelope in their comfort zone. He doesn't understand that they don't understand him, what makes him the way he is or the fact that hours are poured into improving his life by people that love him deeply. He realizes that many people don't want to be around him because of the above, but doesn't know (as other don't)  that occupational and speech therapy and aftercare are not fun and games, but part of his learning process, put in place to strengthen his weaknesses and help him learn.

Autism isn't and hasn't ever been stupid. It's highly intelligent in many areas yet, angers easily when pushed against comfort zones in school lessons, life lessons and situations that aren't easily controlled.
People tend to understand for the most part that he is a child with a neurological challenges. Most of the same accept that along with that, he has many huge abilities including his genius for anything math, his intelligence level, his empathy, laughter and deep love for the people that he loves.

What many might not realize is that when he accomplishes a goal that might appear somewhat lower and slower than his age, intellect & maturity, it has taken days, months and years to gain that ground. It has taken numerous ways to teach him, correct his views, create a safe environment for him that is structured, consistent and true to the high standards he holds for Larry & I, his measure of everything good.

I pray that people will someday be more willing to have a better understanding of neurological and physical challenges. I pray that when people speak to a child with any of the above, they remember that it could be their child being spoken to, judged and deemed to be worthy or not.


We struggle, have battles, have tears.

We walk the road together without a map.

We have faith, hope, laughter, love and one another.

We won't give up.

Sunday, December 26, 2010

Sheer Fortitude

It was the best of times, it was the worst of times.


Christmas this year was poignant, softly, quietly the most beautiful Christmas i can recall. We had a house full of eight, then eleven, then seventeen. Amazing that such a small house turned into a home full of shining, beautiful love with new memories of stockings decorated at the kitchen table, five and one jumping on the trampoline, laughter spilling through the house in tandem and fantastic grilled burgers for Christmas Eve dinner.


Equally amazing was the perfectly timed adjustment in medication for Blue that made his entire holiday his shining moment...the entire day before the Eve of Christmas, Christmas Eve as well as Christmas day, the holiday began and ended perfectly with him declaring...I'm getting a hold on this holiday thing, Mom. :)
I celebrated this special Christmas with the most wonderful man on earth, my husband of three months and three weeks, our six healthy, beautiful children, my parents, my sister andr fiancee and thier beautiful almost year old beautiful baby girl as well as my husbands' parents, a fantastic pair of inlaws.


As I prayed throughout each moment for healing for my dad, I appreciated each small thing I was blessed with...our combined family, the sideways laughter, the excitement in thier voices as they asked from 7 am on Christmas Eve morning, can we open just one now? I gave thanks then as I do now, smiling, remembering that we are *not* alone, whether near or far, in heart. Miles calibrate distance, never taking into account the strength of love, the sheer fortitude of those that love truly and deeply.


We were blessed with two of the greatest friends on earth, both sacrificing a portion of thier Christmas Eve morning to take a myraid of family pictures for us. They braved elements of freezing temperatures and freezing snow around thier own Christmas preparations to indelibly etch in time pure love, unseen strength and raw courage tightly corded together by family.


Christmas Eve night, we went to "the house", my parents' home that will ever be Christmas Eve's home in both my sister's and my heart. We enjoyed perfectly grilled burgers, banana pudding and love overflowing. As presents were opened, laughter flew from corner to corner as orbs oversaw the proceedings, gently through the night. There were times when I could almost feel both Grans (D & G) watching over thier babies (my dad & mom), us, Uncle Bob nearby laughing with us, watching over his Wooligan, my mother.


Every day should be as radiant as was Christmas Eve this year. The quiet peace, the thankfulness that we, a family unit, made wonderful Christmas memories although not mentioned, yet not overlooked at any given moment.


The last few days, my eyes, my heart & my soul have been lifting my dad and mom in prayer, asking for healing, asking for no pain, asking for everything to be perfect for him tomorrow morning. Tomorrow morning, we gather at the hospital as many people across our family and friendship lines gather in heart and soul to pray unceasing for his doctor to find no more cancer and that if he does, it will be taken care of quickly...painlessly, praising and glorfying His name.


As time draws nigh, I pray for the healing, peace, laughter and love that have brought us this far to take us into a new year together, family in our hearts, friends by our sides, healthy, happy and one.