Five families, each one exactly different from the other, except for one thing: they all care for someone living with an autism diagnosis (descriptions to come).
These families know one another from a monthly support group, and for as diverse as the group is, they each try to help one another where they are able. That camaraderie is strained when one of the children goes missing. Questions abound, until the evidence points to a parent of the missing child. To the group, it now makes sense; this parent has always expressed near-loathing for their situation, and had always taken the diagnosis personally. In fact, the parent’s catchphrase was well known to the group: “…and this is what you get.”
Suspicions blossom, accusations fly, outcasts are born and alliances are shattered. Soon, the case goes from a missing person to a homicide investigation, and it isn’t long before the evidence points squarely in one direction. How could someone commit such a horrific act against their own child, people wonder, and even the spouse, a popular and prominent figure, begins to question.
Is the evidence too convenient, or was the suspect just careless? Is the suspect telling the truth, or were everyone’s suspicions justified all along? To one curious character, something about the whole case just doesn’t feel right.
Regardless, everyone realizes that both the accusations and scrutiny themselves are a product of “…this is what you get.”
While “And This is What You Get” is a work of fiction, the struggles, worries, triumphs and frustrations of those living with their loved ones with autism are true, accurate and based on actual experiences. Hopefully, the dramatic portion of the story never happens to a single family.
It’s amazing how fluid the process of writing can be. To see your creation start off in one direction, and then skew of on a wild, random, undetermined and unplanned tangent can be both confusing and exciting. Such is the case with my most recent writing project.
What started out as a “memoir” and follow-up to Sane Child, Different Day, has turned into a fictional dramatic novel. I vacillated over whether or not to switch horses part way across the stream. Since I am still in the shallow waters, I decided to lead her back to shore and get on the other horse from there.
Fortunately, I was able to bounce the ideas of some folks, my wife included. Since the memoir would have included stories about her, I thought I would see how she felt about the change. After giving her a brief synopsis (coming soon), she gave me the green light, and agreed this would be a much more exciting way to go.
So, in the coming months I will be keeping you updated about “And This Is What You Get,” and will provide you with a synopsis, too. For now, I will let you know that, while this is a fiction story, I will be true and honest to that which relates to autism. Your and our struggles, achievements, accomplishments and frustrations will be honestly reflected in every way; there will be no embellishment of autism simply for the sake of selling books. There’s plenty of room for embellishment throughout the rest of the drama!
I updated the “About” section on our Facebook page.
Please check it out, LIKE our page, let me know if there’s anything else you think the page needs, if there’s anything specific you would like to know or hear about, or if there is something interesting you would like to see in “Same Child, Different Day: Five Years Louder.” Let me know by clicking here.
Monday was great weather for our trip from Rutland to Burlington, VT. No matter, at the risk of insulting those ever-so-accurate meteorologists, I even what it was supposed to be like for the entire week, just to make sure. Sure enough, the forecast didn’t imply even the slightest insinuation of moisture in the air. Score one for the Weather Team.
It was a two-hour ride coupled with two appointments that would each be would be a few hours apart. In between, a restaurant and a trip to the University Mall helped us satisfy the three-hour holdover. Overall, the trip was as uneventful as any other we had taken to Burlington. However, we hadn’t headed home yet.
If you’re anything like I am, you’re in tune with how your car is supposed to behave on a normal basis. You know the sounds, the smells, and the sensations you would expect from it. When you detect the slightest wiggle, you get hypersensitive until you realize it was just your daughter in the back seat jamming to 1D.
I felt one of those wiggles. Actually, it was more like a squishy slop coming from the back of the van. When we would turn a corner, the car would more glide around than follow the rest of the machine. I first looked in the rearview mirror; Kaleigh didn’t so much as have an ear bud in, and her lips weren’t syncing “…that’s what makes you beautiful.” Therefore, I did a quick “left/right” shift of the steering wheel just to make sure.
There it was, that sensation I was very familiar with. I pulled over in the hopes of proving myself wrong. I was not — the passenger-side rear tire was flat — mostly on the bottom, but flat nonetheless. Then, the accuracy of even the most imprecise weatherperson came to bear.
It started raining. Right then, right there, the sky opened up just in time to lend a hand in changing the tire. The scenario reminded me of a young Bill Bixby changing his tire in a similar situation — I prayed the lug wrench wouldn’t snap and make me very angry. I wouldn’t have liked that.
After loosening the bolts a little, raising the car and loosening the lugs a little more, I realized I had no idea the condition of the “doughnut” spare tire. Our car is eleven years old, spending most of its life in locales accustomed to using salt in combating snow and ice. Unfortunately, road salt is pretty darn good at combating cheap grades of steel, too.
I lowered the mini spare and my suspicions proved to be true. The years of road salt, rainwater, and abrasive debris under the back of the van did more than just chew into the tire rim. They had gotten their oxidizing little paws on the hangar holding the wheel, too. In doing so, the steel of the hangar and that of the wheel had become one, and (in the rain, don’t forget) I had to gently coax the two pieces apart. Dad smash!
The wheel did finally separate from the hangar, my clothing didn’t tear and my skin maintained its pasty blanched glow. I got the tire mounted, remembered to put everything back, and I was lowering the car in a little under 20 minutes…onto an eleven-year-old compact spare. It was hungry for air. Oh, and it was still raining.
No worries. The car would be dry and we were moments from Route 7. I would top the spare off in a matter of minutes and we could be on our worry-free way back to Rutland. Oh, if that were only true.
In five minutes, we had reached the convenience store. I got out of the van, into the rain, and — of course — found the compressor out of order. That was frustrating, but this was Route 7, one of Vermont’s main North/South highways. There would be another air compressor a couple miles down the road. Oh, if that were only true.
Well, there was another compressor down the road only a couple of miles. At least this one was good enough to post a sign that it was out of order. I could feel the gamma radiation working on my skin tone. We held on to the hope that the next compressor couldn’t possibly be out of order.
When we reached the next air service in about ten minutes, a lady was filling her front tire. Eureka! The rainbow-colored hose at this service station seemed to be doing its job. While I waited to use the machine, Lori and Kaleigh went inside to get snacks. In the meantime, the woman approached my window.
“Are you waiting to use the air pump?” she asked. I assured her I was, but that I was in no hurry.
“Would you mind helping me? I’ve used these things before, but I must be doing something wrong. It doesn’t seem to be filling up.” I got out to help her, and went right into Hero mode. This lass was so distraught, it would take my manly expertise to fill this poor damsel’s tire. Oh, if that were only true.
It didn’t take long to notice the rainbow cover of the compressor hose was nothing more than fancy duct tape. It was not doing its job. The only air coming out of this thing was escaping under the tape. Of course.
The next convenience store/gas station was brand new, and had been decidedly built without the frustration of an annoying air compressor. After that, we found another “OUT OF ORDER” sign. We traveled over forty miles before we found a compressor that was working; we had apparently been traveling on a mini-spare tire that was only one-third full.
We turned left out of the parking lot to travel home without worry. It had finally stopped raining.
If you can’t make fun of yourself, you shouldn’t make fun of anyone. So I humbly admit that for as far back as I can remember, I’ve been a dolt. Oh sure, you can easily point out that children can be, by there very nature, as sharp as a marble. But I think since the dawn of my own existence I have from time to time been, um, hmm — how can I keep from hurting my feelings? — let’s just say: the dullest crayon in the lamp.
I’ll be happy to elaborate.
The year was 1972. My mom was into hot pants and halter tops (sadly, there are things you just can’t “un-see”), my very strict dad owned a successful service station, my brother Guy was almost two and I was in the first grade of Park Street School in Palmer, Massachusetts.
My teacher was Mrs. Fairy and she was, to put it simply, mean. I’m old enough to recognize when someone is just doing their job. This one was looking for some kind of humiliation award. And I remember that she was famous for employing “the corner” as her favorite form of first grade riot control. After you had spent the day pillaging kindergarteners and you were exiled to said corner, the rule was to stand still, hands at your sides — no leaning — and do not, under any circumstances, leave that corner unless so-directed by Mrs. Fairy herself. She just was not a nice lady.
Now being a typical boy who was always looking for recognition, I would brag to my friends when I thought I had accomplished anything I found noteworthy. No matter how trivial or simple, I sought approval (okay, so some things never change). The problem was that I would harp and hound, and relentlessly share my achievement with anyone unfortunate enough to pass within radar distance: my classmates, the lunch lady, some poor soul who happened to be getting gas at my dad’s shop. And the more approval I feasted on, the more I craved. It wasn’t healthy.
So unhealthy was it, that it affected the wonderful relationship I had cultivated with Mrs. Fairy. You see, one day I began the feast slowly; after learning how to write a few letters in cursive, I thought I knew them all. I remember asking anyone who would listen, “Want to see me write my name in cursive?” Or I would tell them, “This is how my name looks in cursive.” I showed everyone. Each and every student in Mrs. Fairy’s first grade class learned my name in cursive. Even after the teacher had asked me to stop, I whispered it one more time — want to see me write my name in cursive?Apparently, that was one more time than she could take.
“Mr. Gilbert,” — (Mrs. Fairy was nothing if not polite to all of us — we were all referred to as Mr. or Miss Whateverthelastname) — “please find yourself in the corner.” That’s what we’d have to do — ‘find (ourselves) in the corner’. I would like to think that she was encouraging us to take a life-defining journey while standing on display in the front of the room. She wasn’t; she was just being mean.
So I ‘found’ myself in the corner, standing still, hands at my sides — not leaning — and prepared not to leave, under any circumstances, unless so-directed by Mrs. Fairy herself.
That is, until that bell sounded.
It wasn’t the recess bell; it wasn’t time for recess.
There was only one other bell it could have been, and kids from kindergarten through high school instinctively know and have looked forward to that bell to give them fifteen minutes of unexpected, welcome, fresh air. I don’t ever remember thinking about the impending inferno we were supposed to practice dodging. It was just another small burst of chalk-free air. Heck, sometimes — once the kids get old enough to think of it on their own — students themselves have been guilty of liberating the masses. Since the consequence for this type of thing in 2008 is much stiffer than “the corner”, I wouldn’t suggest anyone try it.
Anyhow, there was the bell; and on instinct the entire class lined up like soldiers at the door and filed like ants, past the cardboard flames and teachers pretending to be firemen. Out onto the front lawn and into the welcomed air spilled Mrs. Fairy’s first grade class, to be head-counted and critiqued on their evacuation abilities. Then it was back into the classroom for another critique on yet another poorly attempted escape.
What a sight, when the class returned to the room. Though no one spoke aloud, each student giggled to themselves when Mrs. Fairy found herself saying, “Mr. Gilbert, is there some reason you didn’t join us for our Fire Drill?”
Tears streaking my face, I whimpered, “You never told me I could leave the corner.”
It was her rule, not mine.
There was a little boy in the restaurant we visited the other day; he couldn’t have been more than three. He was screeching, banging his silverware and flicking the blinds, and was causing everyone in the place to gawk at him. His mother and father would ask him to stop, and he would ignore them, or he’d smile in their faces, mocking their authority and their apparently insignificant efforts. You’ve probably experienced the situation I’m talking about: the boy doesn’t care who he’s bothering and the parents seem oblivious to his actions.
To be quite honest, I would have moved my table if I could have. It was clear that many patrons including us were wishing the parents could do a better job, though his mother did decide to take him for a walk after what seemed to everyone to be the last minute.
Ah, but there was finally relief.
The peace and quiet lasted about fifteen minutes, until the kid’s food got to the table; his two sisters had been so quiet and patient. Then Mom came back with the unruly boy in-tow, and when he saw the spread on the table, he screeched as loud as his lungs would let him. It was unnecessary, and the stares turned to audible whispers. Why aren’t those parents doing anything to keep that kid in line? If he can’t behave, they shouldn’t take him out in public.
Food seemed to keep the kid quiet, but his appetite was voracious. He used his hands most of the time, treating the fork more as a musical instrument than an eating utensil, and he ate as if he hadn’t seen a meal before. His parents continued to act like nothing was going on and that things were normal. It was really quite distracting.
This kid didn’t seem to have any control over himself whatsoever. When he finished inhaling his meal, his parents had to do all they could to keep the kid off his sister’s plate. Moreover, when they tried to intervene, all he would do is climb on them, or give a head butt to his mother’s stomach or bounce on the booth. There was no controlling this boy, and his parents’ efforts to rein him in him were lackluster at best. You could tell that they had been through this with him before, and it was clear to the whole restaurant that the mom and dad didn’t seem to care.
When the family got up to leave, the boy continued ignoring his parents’ commands. He was running up the aisle and when Dad took his hand, he tried to pull away and dropped his legs out from under him. It was embarrassing and disobedient. It’s also hard to comprehend how the father was putting up with it such an ill-tempered boy or why he was letting the kid get away with it.
When the family finally left the restaurant, there was an overt sigh of relief from the weary crowd and we immediately felt more comfortable. We were more comfortable because we were outside and there were no longer any eyes peering into our lives. We had taken our “unruly” child away from the misunderstanding mass and continued with our lives just as we do every day.
That’s what you do when you have a child with autism; it’s a catch-22. He has to learn how to function in our world. Yet, sometimes in doing so, his world spills over and gets snagged on other peoples’ lives. He isn’t doing it because he’s misbehaving or because we are weak parents; he just doesn’t know any better.
We try to stop him from banging, but still haven’t found a replacement for that activity. The same goes for flicking the blinds and bouncing on the table. We’re conscious that it’s annoying you, and would give the world to have the boy behave like his sisters or your children. On the outside, it looks like we are giving in and letting him get away with anything and everything. Honestly, we only fight the battles we have learned we can win: Brushing Teeth, Keeping Shoes On, Learning to Say “Thank You” in American Sign Language. We’ll get to Restaurant Etiquette, but it may be a while.
As for moving to a different table, we don’t have that option. We can no more move to a quieter section of the restaurant than we can stop taking him out on the town. We try to preplan his order and take him for walks around the building when things get chaotic, because we know what a disruption he can be for you. Before our son graced us with his company, we used to think the same thing about the occasional frenzied child we would encounter.
Now, we feel compassion for those frazzled parents, and even try to offer an ear of solidarity. We have learned to assume less and ask more. We know what they both feel like: those parents and the stares they get. We sometimes wish we could do better by and for him, and sometimes selfishly blame ourselves for his condition.
However, it isn’t our lack of parenting skills any more than the situation is his ‘fault’. Our loving little boy is going to provide the world with excitement for the rest of his life. We might as well introduce him to everyone now.
We also know that the screeching can grate on you; actually, we know it first hand. From the time he wakes until he lays his exhausted body on the mattress, screeching is nearly all he knows for communication. We too, will be happy when he learns how to talk; then he can finally tell us, “I love you, Mommy and Daddy.”
That is, unless you’re just staring at him because he’s too cute for words.
Quite some time ago, I wrote a booklet for folks who have a loved one recently diagnosed with autism. Same Child, Different Day: One family’s experiences during the first year after a child’s autism diagnosis found mild success, reaching readers as close as our home town, and as far away as New Zealand and South Africa.
Its been a while, so I wanted to take this opportunity to share it with you once again. Here’s the website related to the booklet, and, should you want to purchase a copy, you can click here. You can also email me if you have any questions.
Excerpts from the booklet Same Child, Different Day:
“This is one constant that will never change; not over the next year or into the next decade. Nothing about your child has changed just because they were diagnosed with this condition. You will however, have to prepare yourself for some lifestyle changes. To help you along, let’s first introduce you to a short list of words, phrases and professionals that you might come in contact with over the next few months.“label” has been given to their lack of speech, eye contact and social interaction over the last several months, it’s time to prepare yourself for the year ahead. The first thing you need to realize is, there’s one thing that’s the same today as it was last week: this is still the exact same child you’ve held when they were sick, snuggled with when they were tired and adored since they were born.“
“On one particularly cold day, my wife took Nolan to the local mall for a walk and a little shopping. There are a couple of kiddie rides that are impossible to avoid on your stroll. Fine and dandy, as long as you have quarters, or can break a dollar bill.
Lori knows the only way to make it back out of the mall is to give in and let Nolan have one ride. Racing car; steamroller; Jeep; the other racing car; Nolan doesn’t care. Just one ride and he’s a happy boy. Two minutes. No problem. Fine and dandy, as long as you have quarters, or can break a dollar bill.
Nolan instinctively climbed into the racing car, patiently awaiting the falling coins and back-and-forth journey. But why wasn’t Mom showing him the money? Well, because of the darn coin changer, that’s why. See, Lori didn’t have those shiny little quarters, but she did have dollar bills. Of course, the machine refused to swallow them.
Lori knew there was nothing she could do but spoil Nolan’s patience — which is rare but welcomed when he gives it — and head for the most logical place to get some quarters: the arcade. The problem? The arcade is at the far end of the mall and as you’d think, the little boy’s serenity would only last until his feet hit the ground. Well, almost hit the ground.
Nolan was nearly 40 pounds at the time of the Mall Incident, and one of his favorite ways to show his displeasure (other than screaming like we’re pulling him in two), is to lift his legs out from under himself. This day would be no different. Lori began to struggle with this nearly-full-grown child who would have none of her we’re-walking-away-from-these-rides nonsense.
The walk/drag to the other end of the mall might as well have been across the country and Lori could just as easily have been wearing a plaid tutu, smoking a cucumber and singing “Achy-Breaky Heart”; the trip would have been shorter and far less embarrassing. Leaving the mall was another option, but Lori still had some shopping to do.
On a good day, the other end of the mall is only a three minute walk, and in reality, this particular episode didn’t add much more than a minute. But Nolan’s thrashing temper tantrum and strength made it feel five times as long. In her head she could hear the gawkers and critics and “better parents” evaluating our child’s behavior the whole time. She knew for sure that she was on display for the world to analyze, and that her parenting was subconsciously under attack.
Inevitably the arcade rolled up on them. But with Nolan already in a state of critical meltdown, the cacophony of sounds from inside the gallery added to his already deteriorating situation. Since the dollar changers she encountered clearly stated they only dispensed tokens, she would have to find an operator quickly.
Alas, this would not be the remedy she needed, either. She found out from the worker that, just like his picky machines, he too only dispensed doubloons meant solely for the games in his shop. He would have to get permission from his manager to cash out a dollar’s worth of real money. This was not working out, and Lori could feel the discomfort dripping down her forehead. Maybe the candy store next door has some quarters they can change for you, he assured my frustrated wife. Ugh.
So next door it was, and taking Nolan from the arcade only slightly calmed him down. At least the candy shop was quarter-heavy and able to provide Lori with a time-released remedy. So back to the rides she headed with one-dollar’s worth of quarters and the son in tow. If he could understand that they were heading back to the rides, Mom would have explained it to the boy.
But Nolan doesn’t understand abstract concepts like “patience”, “we’ll be right back” or “Mommy has to break a dollar”. Neither does he understand “broken”. When the two quarters dropped, he expected the ride to start its back-an-forth trek, and when it didn’t, he figured any other ride would be just as good.
But there was no other ride to be had. The other contraptions took no less than seventy-five cents, sadly one quarter less than Mom now had available to her. She was not making another jaunt across the mall, and when the little boy realized he was not getting his ride after all, shopping was out of the question. It was time to go.“