Monthly Archives: January 2012

Weary Warriors

Therapy is an important part of life for a kid on “the spectrum” and their family, as well. Shane receives several different therapies throughout the week. In his day school, he receives intensive Applied Behavioral Analysis (ABA) therapy for 4 hours per day, 5 days per week. Basically, ABA therapy is finding a way of motivating the child and using a number of different strategies and positive reinforcement techniques. In addition to ABA therapy, he has music therapy three times per week and sees an Occupational Therapist once per week. He has made leaps and bounds of progress in social situations and self-soothing techniques. He has made friends in each setting and brings surprises to his partners-in-crime and they give him small trinkets, in return. They’re simple things that mean a lot; a ballerina ornament, plastic egg with rocks, a green toothbrush, rings from gumball machine, plastic frogs, spiders and tiny cars. All of these are tremendous strides since anyone touching Shane’s things would normally have resulted in a kicking, throwing, temper tantrum. In fact, he thought that every kids toys should belong to him “forever and his whole wide life” which resulted in no play dates, ever. We were too afraid of the freak-outs and are still are not comfortable, although we’re almost there. 🙂

At each office, I watch the kids come and go. They have various degrees of needs and characteristics ranging from those who are severely autistic who need any and every service they can get to “normal” kids needing only speech therapy. Some are in wheelchairs and can’t walk, some refuse to get out of the car or get back into the car, throw their backpacks on the ground and refuse to get up, others are running around the waiting room because they can’t sit still, some are making odd noises, some run to their favorite seat before anyone else can sit there. Many carry cell phones, iTouches and iPads, watching the same video over and over for constant entertainment. During the time the kids are in therapy, the parents and caregivers surf the web, knit (I’ve seen a ball of yarn turn into a whole sweater), do paperwork enjoying their every minute of their hour of solace. I see the same ones weekly and wonder how they do it, where do they find the strength to care for someone who demands so much of them every minute of the day…they weary warriors.

Each week, Dave* leads Sam* into the office with a gentle sway and soft words. He has dark circles under his eyes and looks like he could collapse at any moment. Sam is severely autistic and commands every minute of his father’s time. He is non-verbal, walks with a shuffle and doesn’t really communicate in an effective way. He carries an iTouch and watches the same videos repeatedly. Each week, when the therapists come for Sam, taking away his iTouch for less distraction during his session results in a noise that is difficult to describe. Once Sam has left with his therapists, you can see Dave breathe a sigh of relief.

We had never really spoken before, but on this occasion he shared part of his journey with me. At six weeks of age, it was apparent there were problems with Sam. He stared blankly, cried continuously and responded to no ques. At ten, Sam has the developmental capacity of an 18 month old baby, but is the size of a 15 year old boy. Dave met a school administrator somewhere along the way who assured him that they could get Sam into a public school program in Charlotte that offered the specialized services he needs. So, he sold his prospering company in NY and relocated to Charlotte. I sat and listened, taking in all the information I could. When Dave talked about Sam, the love beamed from his eyes. He smiled when he told the story about a barber in town who cuts kids hair when they’re laying on the floor in between playing “Red Light/Green Light.” I could tell that a good sense of humor was part of what was keeping Dave on the sane side of the mountain.

When Dave’s grandmother died, he and Sam went to the funeral. The minute the director of the funeral home saw them walk through the door, he directed them to the “children’s room.” Dave said they didn’t want to go to a separate area and would be joining the rest of the family. As always, Sam had his iTouch in hand. He wouldn’t wear headphones so Dave turned the volume down, but Sam just turned it up. He watched his video and found his favorite scene, rewinding it to the same spot over and over again. So in the midst of tears and sorrow, the guests heard special music playing during the funeral service, the Cowboy Dance Song from Elmo’s World: The Wild, Wild, West. Through the tears and laughter of the guests, Dave knew that his grandmother wouldn’t have wanted her funeral service to be any other way.

Dave’s story is inspirational to me. Each evening when I climb into bed wondering where to find strength for the next day, I think of Dave and others like him. As exhausted and overwhelmed as I feel at the end of the day, I know that my challenge is nothing compared to theirs. They are so weary, yet so strong with such courage, tenacity, love…they are true warriors.

“Perhaps I know best why it is man alone who laughs; he alone suffers so deeply that he had to invent laughter.” –Friedrich Nietzsche

*Not their real names

I’m a Nocturnal Daywalker

Sleeping seems to be a challenge for a lot of kids on the autism spectrum. Shane is no different. But, his particular sleeping issues seem to stem from watching too much t.v. That’s obvious since he says he’s a nocturnal daywalker.

Being nocturnal would mean that he’s up all night participating in activities such as hunting and gathering (i.e., finding and scattering every toy in his room while gathering an impressive collection of snacks). Naturally, his evenings would also involve hours research (firing up the Kindle to engage in baking pretend cookies and climbing the walls like ninjas dodging squirrels and birds). He would need minions to assist him with leaving no trail which would come in the form of two dogs who gladly serve in order to eat the collection of crumbs left from overnight snacks.

For those who don’t know what a daywalker is, it’s not a daytime hooker. It’s a weapon of mass destruction with exceptional good looks and the ability to sparkle in the sunlight. They can also  infiltrate those of us who possess souls. There’s no doubt that Shane is a weapon of mass destruction (he can totally destroy a clean room within five minutes), he’s got the good looks going and most certainly sparkles and shines the minute he enters any room. I guess the soul possessing thing could be the way he reels in unsuspecting strangers with his charm and personality.

While I’m not completely convinced that he is a nocturnal daywalker, his story tonight offers a glimpse into his actual method of regeneration (he’s getting it from somewhere as no one without regeneration could run or talk like he does all day long). Although he’s convinced that he doesn’t sleep, he offered this insight at bedtime tonight…

“Mommy, you don’t have to tuck me in because you know that I’m a nocturnal daywalker and I don’t sleep. You can read a story and sing lullabies, though. I’m gonna turn the radio on country music even though you sing better. I’m gonna need my lamp on, too, so I can see what I’m doing. And, when I wake up in the morning, I’ll tell you about the dreams I had. And, don’t forget that I have funny dreams, Mommy.”

As always, in the days of life with Shane, I remain totally clueless and confused about the state of my child’s being. All I know is that when I go to his room before I turn in, I step over every toy on the floor, pick up the snack paper, put the Kindle on the table, turn off his lamp and radio. And, one kiss reminds me that there’s nothing more beautiful than a sleeping child. If I’m lucky, as I’m walking out of his room, I hear the sound of laughter coming from the dreams he’s having undoubtedly as he’s sleeping and isn’t nocturnal, after all.

Real Statuses from Shane’s Facebook, Part 2

  • “I don’t want a hamburger, Mom! I don’t eat animals! I’ll have chicken, instead.”
  • When I read my sight words, this is how it goes, “the, is, can, go, I, to, like…I LIKE BIG BUTTS AND I CANNOT LIE!”
  • It’s not a good idea for boys to sit on the toilet like a girl to pee but the rocket effect does give Mommy something to yell about early in the morning. Off to school to add a little life to my classroom.
  • I’m a multi-tasker. Ten minutes drying my hair while trying to fit my entire fist into my mouth. Take it from me…hair drying is much easier.
  • “Taking care of a stelekin (skeleton) is really hard work. Their legs break off all the time. Right, stelekin?” Right, Shaney.
  • “Daddy is Mommy’s husband cuz she gives him good hugs and kisses. Mommy is Daddy’s wife cuz he gives her good hugs and kisses. I’m the son so I give good hugs and kisses. Jessica is the sister, but she’s a teenager and gives fake hugs and kisses.”
  • “I DON’T WANNA GO TO YOU NARK CITY! The elevators in the skyscrapers go too slow!”

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“A boy is truth with dirt on its face, beauty with a cut on its finger, wisdom with bubble gum in its hair and the hope of the future with a frog in its pocket.”  Author: Unknown

It Ain’t a Coin!

 

Previous entry: August 18, 2007

OK, I’ve come to the conclusion that little boys are nasty. I now understand why the moms on television are always checking their little monsters’ pockets. And as each day goes by, the old adage that boys are different than girls is reinforced.

Today, Shane was rolling around on the floor with our dog. Reesey tolerates Shane tugging on his ears and pulling his fur every which way. He’s a really good dog for a pound puppy or for any puppy for that matter. He’s primarily an inside dog, but living on a ranch gives him plenty of space to roam. One of his favorite activities is rolling in manure, but I digress.

Back to Shane…after rolling around on the floor with Reesey, he jumps up on the couch to sit next to me. I think, “Oh, how sweet. My mama’s boy sure does love me.” I notice, though, that he has something in his hand. It’s obviously a very special treasure judging by the extra-tight grip. Being the child of a magician, I automatically think it’s a coin he’s found and hold my hand out for him to give it to me. “NO! NO!” After serious coaxing, I convinced him to at least show me what he’d found. Well, let me tell you, it wasn’t a coin. It had legs! About eight of them, in fact. It was the fattest, juiciest, grayest tick I’ve ever seen (that’s saying a lot since I grew up in the backwoods of Louisiana)! It was so fat, in fact, that it had almost outgrown its legs and probably couldn’t even crawl if it tried. Convincing Shane to give it to me was no easy task. It took bribery…with raisins. He was perfectly content with the trade when I pointed out that the raisins resembled his tick.

This story brings to mind an old joke I heard as a child. I’m horrible at telling jokes, but here goes:

Mama’s in the house. Her boys are playing outside under the house of all places. Mama yells to the boys, “Hey! What ya’ll doin’ down under dere?” They say, “Eatin’ raisins.” Knowin’ good and well that she didn’t give them no raisins, her curiosity is peaked. “Where ya’ll get dem raisins?,” she yells. Little voices from under the house…”Off this here dawg!”

Two valuable lessons were learned that day. One, to check Reesey for ticks when he comes inside from rolling in the manure. More importantly, I learned to make sure it’s raisins that Shane finds on the floor to eat.

As Charles Dickens wrote, “A boy’s story is the best that is ever told.” I’m happy to have a boy who, without a doubt, will provide much material for a good story.

Dear Shopper Staring at My Kid Having a Meltdown in the Grocery Store

I ran across this post and thought I’d pass it along for the sake of awareness. A little education goes a long way, so does a sense of humor! Great blog packed with information. Well said. Open-mouthed smile

Follow her blog at http://flappinessis.com/blog-roll-coming-soon/

“Yes, I know. I’m well aware that my child is screaming. Not just a regular scream, but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right? There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.

This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well, too. I don’t want to be ugly, even though right now I feel like it.

Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.” I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided. So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then PRESTO, WHAMMO — you are a new and hopefully improved person.

Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.

My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There IS always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system. So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows? Maybe I’ll get to see the one hidden behind yours.”

http://flappinessis.com/2011/12/28/dear-shopper-staring-at-my-child-having-a-meltdown-in-the-grocery-store/

Beautiful Boy

There are many days when my heart breaks because I feel like I can’t protect Shane from a life of frustration and being placed in difficult situations that he’ll have to learn to navigate himself. It’s out of my hands. That’s a big admission for a self-confessed control freak. I’m doing all I can which is to stand by his side and get all of the professional help that’s available to us. I don’t want him to be ostracized because he hasn’t learned how to always use kind words, share, take turns, actually “play” and talk with a friend instead of just being in their presence. His new teacher says that because he’s so loud and never stops moving, the other kids at school are a little leery and generally steer clear of him. So even kids “like him” aren’t sure how to include him. I don’t want him to see the weird looks we get from adults who are perfect and have perfect kids (according to them, anyway). The world is cruel. It’s their loss, not his. He’s an awesome kid. He doesn’t seem to notice the looks. Guess that’s my hang-up, not his.

At the playground yesterday, he stayed away from any play area with kids. He found a row of swings empty except for one baby. He hopped up on one. I was there to push him, but there was an elderly lady standing there pushing her granddaughter. I asked if he wanted a push. He said no and turned to the lady. He said, “My name is Shane. I’m 6. Do you want to be my friend? Who are you? Linda? Okay, Linda. Now I’m your friend. Can you push me?” She spent the next 15 minutes swinging him. I stood back and watched. Thank you, kind stranger. On the way back to the car, I tried to hold back my tears but couldn’t. Shane saw me and said, “Mommy, I just made a new friend! She liked me! Are you crying happy tears because I made a new friend, Mommy?” We got into the car, he hugged me and climbed into the back. Be still my beating broken heart. Thank you for being kind to my beautiful boy, Linda…my beautiful, beautiful, beautiful, beautiful boy.Red heart

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Beautiful Boy
by John Lennon

Have no fear,
The monsters gone,
He’s on the run and your daddy’s here.

Beautiful,
Beautiful, beautiful,
Beautiful boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It’s getting better and better,

Beautiful,
Beautiful, beautiful,
Beautiful boy.

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we’ll both,
Just have to be patient,
Yes it’s a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans.

Beautiful,
Beautiful, beautiful,
Beautiful boy,
Darling,
Darling,
Darling boy.

Real Statuses from Shane’s Facebook

NOTE: These are real. One cannot make this stuff up!

October 2011-December 2011

“I wish I had a job. I wanna be an elf, but I don’t live at the North Pole. I’ll just be a photogidder. Can I be a photogidder like you, Mommy?”

I enjoy photography. Open-mouthed smile


“If Jessie is going away to college, who’s gonna be my sister? Am I gonna get a new one? She’s not gonna live here anymore?!?! Why is she gonna live with a new family? When is she coming back? Why does she wanna be a grown-up?” :-/


So…I have to listen to the Christmas music station at bedtime instead of the Country music station. Seems Mom and Dad didn’t appreciate me singing, “You look soooo damn good!” at the top of my lungs while I was playing outside today.


Pulled up beside a truck tonight. The guy in it had the window down and he was smoking. I rolled my window down and yelled, “STOP SMOKING THAT CIGA-RATE! IT’S GROSS!” I don’t think he heard me. I’ll yell louder next time.


To babysitter: “When are you going to have your baby?” Tiffany: “I’m not pregnant, just fat.” Touché


“Always remember and never forget…Mommy will always love me, no matter what. Mommy, are nipples private?”


In a rare moment of silence and stillness, Mommy asked me what I was thinking about. “I was thinking about that cowboy nutcracker setting on the shelf next to my tree…he has a weapon!”


What do you do when the neighborhood kids won’t get off of your Razor Rip-Rider 360? Run inside, strip down to your underwear, get your zombie baby* and chase them with it. Mission accomplished!

*We had a Halloween party and set up a nursery with clowns and zombie babies. Shane adopted two of the babies…Hungry Harold and Chloe. He used Hungry Harold to hit the neighbor’s kid. They got packed up and put back into storage after Halloween…thank goodness! Open-mouthed smile

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“I don’t have an aptitude!! Do I look like I have an aptitude to you?!?”


“DON’T DRINK COFFEE, MOM! IT MAKES YOUR BRAIN SMALL! AND, WINE, BEER AND CAFFEINE! Someone at my school is really smart and they know about brains and they told me. I don’t want your brain to shrink, Mom!”


“I like beer. Why can’t I have beer? I like it. Please, Momma. I’m not old enough? Well, I’ll just have wine and caffeine, instead. I weigh 53 lbs. so I can drink A LOT of caffeine!”


“Hurry up! I’m gonna be late for my meeting with Freddy*! We’re cooking hands for everyone!”

*He also fell in love with Freddy Krueger from the Halloween party.


“Hey! I know that song! It plays on my country radio! It’s the one more drink song. It’s about a man who got the wrong drink, but it’s ok. They solved it. Kids sing at the end of it, Mommy!”

FYI-It’s “One More Drinking Song” and it isn’t kids singing at the end…it’s drunk Mommies and Daddies.


“My weenie dog is lippin’ his licks.”


“Mom, you’d better move that mean clown from the living room and put him in the diamond room (dining room)! He’s gonna kill the zombie babies!”

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Don’t worry. There’s plenty more where these came from. Open-mouthed smile

It’s Ingrained and Cannot Be Changed Regardless of Nagging

I’ve always heard people say that boys are different than girls. I heard, “Oh, he’s all boy!” and wondered what the hell that meant. How could boys be that drastically different from my daughter (she’s 18 now)? Once we had Shane, I realized that there are VERY obvious differences between the two sexes. There are things ingrained at birth and remain with the male species throughout their entire life. For example:

  • Must have remote controls (the more and the longer, the better).
  • He who dies with the most toys wins (BONUS for the most electronics).
  • If something is stuck, rip it out. Who cares if you tear up something else in that effort?
  • So what if there are leftover pieces of something you’re building? The manufacturers obviously put in extra pieces.
  • Why walk someplace when you can run (this traits seems to disappear around 13)?
  • Leave a trail of clothes from the door to the bedroom…always.
  • Smear toothpaste all over the counter. Don’t bother wiping it off. There’ll be more tomorrow.
  • Put empty boxes of food back in the pantry.
  • Doritos and marshmallows are a perfectly balanced meal.
  • Leave empty soda bottles on the counter, nightstands and tables (applies to juice boxes, too).
  • Leave cabinet doors and drawers open (and drown out the sounds of them being slammed shut the next morning).
  • Leave rocks, woodchips and crayons in your pockets to be washed (this applies to magic coins, as well)
  • Step over toys/clothes at the bottom of the stairs instead of carrying them up.
  • Hide crap in any nook and cranny you can find (*or just leave everything scattered-see evidence below which took about 15 minutes in boy time).
  • NEVER pee in the toilet. No one will even notice it on the floor or walls. Flushing is optional.
  • Be stubborn as hell. Never admit you’re wrong.

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But, with all of these ingrained behaviors comes other more pleasant ones and more sweetness than imaginable:

  • Making “pretty eyes” at all the ladies.
  • Flashing a smile that melts his mommy’s heart.
  • Being the cutest kid ever with one rubber boot on, one off, regardless of the outfit you’re wearing..
  • Realizing that those rubber boots are perfect for splashing in the rain and splashing all of the dog’s water out of the bowl.
  • Dragging around your blankie as if his life depends on it (morphs into a cell phone around 13).
  • Saying “BYE-BYE” with such a Southern drawl that it sounds like “BAH-BAH.”
  • Laughing at himself.
  • Curling up with your mommy for one last snuggle before being tucked in.
  • Telling your mommy that she sings the prettiest lullabies.
  • Melting your mommy’s heart.

What’s one of the greatest compliments to me? “He sure is a Mama’s boy!” That means we’re raising him right.

MISSION ACCOMPLISHED

shane blankie

“He’s Just a Two Year Old Boy.”

Shane was a delightful baby, full of laughter, smiles, love. Starting at around two years of age, we began to see signs that something wasn’t quite right. There were incidents of aggression, severe meltdowns with no obvious cause, hitting, throwing chairs, etc. I had to go the emergency room twice from injuries resulting from physical aggression, once for getting hit in the ear with a rock and again for a scratched cornea. He even broke his time-out chair! Open-mouthed smile  He seemed so happy but switched moods in an instant…like Dr. Jekyll and Mr. Hyde.

In an effort to put him in situations where he would get more socialization, we enrolled him into the half-day program at the YMCA. After many phone calls from the school to report incidents of hitting, biting, throwing chairs and fits of rage, he was deemed “not a good fit” for their program. Even when we went to the gym to work out and put him in the childcare for less than an hour, we were called for the same reasons.

Bound to get him into some sort of a program, we found another preschool where the teacher seemed to be the right fit for Shane. She was patient, persistent, kind and he adored her. He still continued to have outbursts, but she used tactics that seemed to help him calm down. I still received phone calls and had to pick him up several times. But, the school made a huge effort to help develop a plan that would work for him and help him cope with a stressful/different environment.

A couple of months after he started his new preschool, his teacher called and said, “I think Shane just had a seizure.” Her brother was an epileptic so she was familiar with signs to look for. We had seen instances of him staring for what seemed like a really long time. It was usually after an outburst and we assumed he had just worn himself out (I would been exhausted if I threw fits like that! Open-mouthed smile). The next time we saw it happen, we called his name and he didn’t answer nor did he blink or respond in any way. Although it seemed like forever before he responded, the spells really only lasted 5-7 seconds.

We took him to the pediatrician thinking the switching of moods so quickly might have something to do with diet, seizures or something else not obvious to us. We just knew that whatever was going on was not “normal.” Our pediatrician dismissed our claims by saying, “He’s just a two year old boy.” She obviously wasn’t listening when we described the extent of his daily behavior. She suggested that we make sure he had something to eat every couple of hours (yeah, that’s it…we were starving him :S) to see if spikes or drops in sugar levels could be affecting his behavior. No tests were conducted. We left feeling totally defeated but knew that we were strong parents and would figure out methods that would work.

The disruptive behavior continued to escalate. We finally made our way to a pediatric neurologist. It was discovered that he had an arachnoid cyst on his brain in an area that could cause seizures. We were sent to a neurosurgeon who advised us that it was the type of cyst that is slow growing and not likely to ever cause a problem. We were told to get new MRIs every two years to make sure it isn’t growing. Based on history of staring spells, he was placed on medication for seizures. Since starting the medication two years or so ago, we have only seen a few other incidents of the staring, but the aggression, outbursts, etc. continued.

During all this time, he was never able to have “real” play-dates because he had major social issues with other children. We felt really sad and sorry for him and hoped for the best every time other children were around. He became easily overwhelmed, frustrated, hit other kids (not with ill intent), had major meltdowns, then withdrew. He preferred going to a corner and playing alone. He had invisible friends that he preferred to interact with and whispered to them while everyone else went about their business. Any new situations and changes in routine were too much for him to handle. He covered his ears when the vacuum came on, ran out of the bathroom when the toilet was flushed and screamed in public restrooms when the hand dryers came on. Certain stores and restaurants instantly caused meltdowns for no obvious reasons. We got the “looks” from other shoppers whose children must be perfect (screw them, by the way). That made it worse and made us feel even more like total failures as parents.

In August 2010, he started kindergarten at a public school. Given our history, we crossed our fingers and hoped for the best. Needless to say, it didn’t go very well and we removed him resigning ourselves to the fact that he would have to be in another learning environment. We just didn’t know what.

We desperately searched for answers and after a series of evaluations with a child psychologist, he was diagnosed with an Autism Spectrum Disorder (ASD); specifically Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Attention Deficit/Hyperactivity Disorder (ADHD). Although it was a swift kick in the stomach to hear the word “Autism,” it explained a lot and gave us many answers. But, more importantly it opened doors to resources we did not have before. Microsoft has benefits unlike any other and has allowed him to get into a program to address his specific needs with intensive Applied Behavioral Analysis (ABA) therapy.

Even with the challenges, we’ve experienced more joy in our lives because of Shane. We are thankful everyday for the alignment of the stars that brought him into our lives. He makes us laugh daily. He is a sweet, gentle soul. His innocence amazes me. He has the longest eyelashes most girls would kill for and beautiful brown eyes to match. He has a fabulous imagination, tells the best stories (he won the “Best Storyteller Award” at school), offers enlightening insight and views on life, runs outside in his underwear to greet the pizza delivery person, embraces things he’s afraid of (like zombie babies), gives the best hugs (even to strangers) and is beautiful inside and out.

I’m done writing about the history and events that got us here today. It’s boring for readers, but doing so has been therapeutic for me and  I hope helps create more awareness of ASD/PPD-NOS/ADHD. It is estimated that 1 in 100 children have ASD. On average, it is 4 to 5 times more likely to occur in boys than in girls. It’s an epidemic, people!

http://www.cdc.gov/ncbddd/autism/data.html

Now, on to the fun stuff which is sharing stories about his little quirks, creativity and other things that keep us laughing. Get ready to meet the REAL Shaney P Robinson in all his glory!

Speaking of Shaney in all his glory: Meet the nekkid cowboy!

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Smile

A Special Christmas Gift

Christmas 2005 was a busy one for us. We were doing the usual Christmas thing and were getting ready to drive to Florida for Shane’s birth on December 26. The delivery was scheduled for December 28.

We weren’t allowed to go into the operating room. After Shane was all clean and shiny, the nurse came to get us. We went to the nursery and could only look through the window. We were not allowed to hold him. We immediately knew which baby was ours. At 10 lbs., 2 ozs., and 22 inches long, he towered over all the other newborns. He was so fat we could see rolls on his back as the nurse was dressing him. The wristband he was wearing said “SNAP” which means Special Needs Adoption Process. He was the only SNAP baby there and the nurses were particularly protective of him. We couldn’t wait to snuggle this sweet little bundle seven years in the making.

Amidst all the tears of joy, I’ve never felt something so deep and profound as the feelings I had the day Shane’s birth mom left the hospital. Gratefulness, elation and sadness were among them. Shane had to stay in the hospital for a couple of extra days so she left before we did. She held Shane one last time and handed him to me in tears. We walked downstairs with her, had one final hug and she got into the car. As I watched her drive away, I felt like I was taking something from her that wasn’t mine and that I didn’t deserve. She had made the most courageous decision that could ever be made. I never could have done it. I would’ve been too selfish. She summoned the strength from someplace I’ve never been nor would ever be. I felt like she needed to be “mothered.” I can’t even begin to think of how she must have felt driving away from the hospital for the second time in her life without a baby. Making a decision that would give the babies a good shot at life is one of the most heroic decisions any woman could ever make. I often wonder what she thinks when she sees the beautiful statue of the elephant (she loves them) we gave to her at the hospital.

We agreed to keep in touch, send pictures, notes, etc. I send photos to the adoption agency to be kept on file in case she ever wants to open that chapter of her life and see the beautiful child she gave birth to…the one from her body and from my heart.

There are no words to describe the love and admiration I have for her. It is my hope that she has passed on her strength and courage to our baby boy. And judging by the type of little man he’s growing into, I think she did.

So, What Do You Think About Adoption?

My BFF, Michelle and her husband adopted a baby from Florida in November 2003. The baby’s birth mother was a kind, loving, beautiful, gentle soul who was truly a victim of circumstance. At 21, Tripp was the third child she had given birth to. She married young and had two children before Tripp was born. The stage was set for a life of struggle and poverty for her and her family.

In October 2005, Michelle received a phone call from Tripp’s birth mother.  She was pregnant and adding one more child to an already struggling family was more than they were prepared to deal with. Seven months into her pregnancy, she called Michelle to ask if she would be willing to adopt the baby (Tripp’s full sibling). Then, came the phone call to me from Michelle. When I answered the phone, Michelle was crying and asked if I was sitting down. Amidst the tears and sniffles from both of us, she shared the entire story. Then came the question, “What do you think about adoption?”

Because of the heartbreak involved with infertility, Scott and I tried to accept the fact that we would be a family of three. But, I still had not fully grasped the concept of not having more children and was having an extremely difficult time facing the truth. The birth mother wanted an answer from Michelle quickly before she decided to contact an adoption agency the next day. I had one small problem in discussing the whole ordeal with Scott…he was in Las Vegas.

Scott’s phone rang when he was standing in the casino of the Venetian. Over the sounds of slot machines, he could barely hear me. He knew the sobbing on the other end was either really bad or really good. What he heard on the other end stunned him. I ran through the whole story with as many details as I could remember. As you can imagine, the conversation didn’t go very smoothly. I could already envision myself being a mom again and Scott had made greater strides in moving forward than I had. So, over the phone from the lobby of a casino, we decided to take a gamble and made a decision that would change our lives in ways we never could have imagined. Jackpot!

In the Beginning…

On the first day of 2012, I find myself reflecting on 2011 like most of you probably are. I’m mostly thinking about all the love, strength, courage, perseverance that Scott, Jessie, Shane and I have shared with each other and that of friends and family. I’ve always considered our little family to be a strong one and the challenges we faced in 2011 put that to the test. Not only did we prevail, but a stronger unit has emerged. Personally, it brought a lot of tears…mostly happy ones but no shortage of sad ones, either.

In 2011, Jess entered her senior year of high school, got her first “real” boyfriend, was accepted to Western Carolina University where she will major in Pre-Med or Nursing and minor in Journalism this fall…all very difficult things to grasp considering she’s still the mischevious five year old punkin in my eyes. She is as beautiful a person you will ever meet inside and out. Her smile is adorable with the cutest pouty lips I’ve ever seen (which has served her well in her childhood). She amazes me everyday and I could not be more proud of her and all that she’s accomplished so far.

Most of those reading this blog are also friends on Facebook and have read posts and seen pictures about the shenanigans and adventures of our lives with Shane. Many have said that the posts and pictures on FB keep them laughing and said I should write a book (for their entertainment and ammunition for embarrassment in later years). Instead of a book, I’m taking the cheap and easy way out by starting a blog. I think I’ll call it “The Wild and Wonderful World of Our Boy, Shane.”

The blog calls for a bit of history before moving on to the adventures. The history of Shane and how he came into our lives is, in itself, extraordinary. I suppose it offered a slight glimpse of how life would be with him.

After ten years and as many failed attempts at conceiving, we threw in the towel and decided to move on with our little family of Jessie, Scott and I. Although we had made that final decision, I still felt like something was missing and knew it was not going to be an easy hurdle for me to clear. That was July 2005. Fast-forward to October 2005 when I received a phone call from my BFF, Michelle. Things were about to change.