On a rather idyllic Wednesday evening, our family had just finished evening scripture study and family prayer when Hubby told Little A that it was time for bed.
“I am pretty tired,” she responded sweetly and yawning. She picked up her stuffed animal and trudged toward her bedroom, but the six-pack of easter eggs she had colored with Grandma earlier caught her attention as she passed by. She immediately put on her very best puppy-dog eyes and approached the parent most vulnerable to this particular attack – Mom.
“Can we please have just one little Easter Egg hunt? Oh; pleeeease?”
“Ok, but then it’s bedtime.”
She fluttered off with the prized eggs carefully tucked under her arm.
Seconds later, a wail of despair erupted from the office. One precious egg had rolled from its hiding perch and cracked.
On any other evening, the ensuing tantrum would have become legendary. Her wails quickly moved from pitiable to pathetic to completely obnoxious. When she refused to be consoled, I quite unceremoniously sent her to bed with her older sister to ensure she stayed put.
While Big A wrestled with weeping Little A, I hunted for the remaining eggs, but only found three of them and gave up.
A few minutes later –
“EEEW! I found one of the eggs, Mom! Gizmo just barfed it up!”
Sure enough. There it was – completely intact with only a couple of cracked spots from the pressure of swallowing it whole. Even the tiny, white stickers Little A had so carefully adhered as decoration were still attached – now caked in slimy dog goo. We carefully rehid the almost-perfect-barfed-up treasure – deep in the garbage can – knowing that Little A
would come unglued if she realized she had lost yet another precious egg.
With the egg crisis temporarily resolved,
I went to bed – only to be awakened a few minutes later by eruptions of mad giggling as Luke blew into the room. He grabbed my arm and tugged me to his room.
Desperate for sleep, I decided to play along and plunked myself down on the floor next to him, lightly scratching his bare back in a drowsy attempt to calm him back to sleep. And yet, hours later, my little joker was still unsettled. Every time I dozed for even a moment, his maniacal laughter would jolt me back to consciousness, and I would dutifully resume my assigned post as back scratcher.
Around 2am, Luke decided he was done with his evening back rub. It was time for a midnight snack. He plowed headlong into the kitchen, giggles still erupting freely, and made himself a plate of chips with cheese. I sat on the couch – half asleep & half listening for him. He finished his snack and dragged me back to his room where I promptly collapsed. He shut the door and turned off the light. Finally – sleep!
As I played dead,
Luke’s giggles continued to overflow. It was like he was reliving some hilarious joke and kept replaying the punchline – over and over and over. He just could not stop laughing. After another hour or so of this, I am DESPERATE for sleep and decide it is time to give him some more sleeping meds.
I dragged myself up, stumbled toward the door, stubbed my toe on the bed frame, flipped on the light, and reached for the doorknob. It was LOCKED! (**Important note – the doorknob is turned around backward so we can lock him in when he is just completely out of control.) Usually, when this happens, I can just use my fingernail to twist it open, but they are all too short to get into that little slit and twist it open. UUURGH!
At this point,
Luke is just busting a gut watching me fiddle with the doorknob and I realize that I AM THE PUNCHLINE TO HIS JOKE! I am SO, SO TIRED, I just cannot even think straight. I am digging through the blankets on the floor, looking under the bed, trying desperately to find some tool – a hairpin, a paperclip, anything – to me get out of this room and to those magical meds that might SHUT THIS KID UP!
I am so desperate, I completely lose it and start banging on the door to wake someone up.
“JOHN! JOHN!! WAKE UP; SOMEBODY WAKE UP!!!!”
Luke thinks this is even more hilarious, and I don’t even care at this point. I am pounding and pounding.
So I start yelling into the air vents. I am right above my teenage son’s room. Surely he will hear me. “WAKE UP!! SOMEBODY WAKE UP! LET ME OUT!”
Hubby is always complaing that he can hear us walking around above him when we are up, so I start jumping up and down like a wild monkey, screaming, ” WAKE UP, WAKE UP, WAAAAAAAKE UP! LET ME OUT!!”
I am in tears and just…. so…. desperate. Luke is utterly maniacal and simply cannot contain the belly laughter. He is literally rolling on the ground laughing uncontrollably.
Then, I hear it . . .
“Mom? Mom? Where are you, Mom?”
Oh; Hallelujah! I finally woke T up.
“I’M LOCKED IN LUKE’S ROOM! LET ME OUT!
LET ME OUT!!”
T finally released me and I am just a sobbing mess. I fall out of the room and hug him.
“I was afraid I would never wake anyone up! Thank you! Thank you!”
“You didn’t wak me up, Mom. I just got up to tell you that Gizmo puked on my bed.”
At least I am free. I trudge downstairs to clean that mess up, but God bless that stupid dog, he had it all cleaned up already by the time we got down there. I sent the dog outside – just in case it didn’t stay down – again.
At this point, I started to wonder what was up with the rest of the family. Why had they not woke up with all that racket? I got a sick feeling in the pit of my stomach and went to check on D, the teenage son directly under Luke’s room. His door was locked, and I about cried at the prospect of having to open another locked door. I banged on it a few times, but then found something to pick it. His TV was blaring; his body was lifeless on the bed. I started screaming at him and slapping his feet, convinced that the whole family must be dead from carbon monoxide poisoning that was making Luke crazy too.
Finally, he sleepily sat up, and I came unglued on him.
“SHUT THAT STUPID TV OFF! I’ve been screaming at you for hours!”
He stood up and shut off the TV.
It is about 4 am now. I went back upstairs to get Luke his meds, praying to catch a couple zzz’s before I have to get up for work. When I get into the living room, I hear Luke in the bathroom. He is sitting on the toilet, banging on the wall and screaming, “JOHN! JOHN! WAKE UP!” then bursting into laughter, reliving the funny scene in vivid detail, mocking the desperate inflections of my voice.
He finishes his business on the toilet and decides he needs a bath (as usual whenever business is #2). I give him his sleeping meds while he fills the tub then collapse on the couch to rest a little as he takes his bath. Pretty soon, he is jumping up and down in the bathtub screaming, “JOHN, JOHN!” Clearly, he enjoyed my monkey dance too.
I didn’t even move to stop him. Just sat there praying for his meds to kick in and put an end to my misery.
I glance up at a noise from the office and see John standing in the doorway. The monkey dance in the bathtub finally woke him.
He stood there in bewilderment staring at the messy lump of tears on the couch. “What’s wrong? What’s going on?”
“Just listen to him! CAN’T YOU TELL?!” Luke was still in the tub, doing my monkey dance, copying my desperate call for help, and laughing uncontrollably.
In the end, we finally slept an hour or so before going to work. And the next day? Teenage son had no memory of the night’s antics at all.
Gizmo was the real hero of the night for swallowing another egg whole, puking it up, waking T to save me and then cleaning up his own mess. My HERO!
In my other life, I am a dental hygienist. You know – my other life – the life where I have intelligent conversations and move about my environment as I choose; the life where my work is appreciated and rewarded and my ideas are valued and considered – well, most of them anyway – there is that flossing idea I keep throwing out. . . . Anyway, the point is I exist as a relatively, “Normal,” human being in my other life.
So in this alternative existence as an intelligent being, I have landed the grand prize of jobs – an office that I genuinely love working in. I love everything about it; it is close to home; it has the up-to-date equipment and tools that make work easier; and the staff is upbeat and friendly. It is where I go for fun in this twisted, backward life of being an autism mom.
An autism mom – is that who I am? It has certainly become my primary identity. Inevitably, when people ask about me, Luke is where the discussion lands. This has become a challenge as I meet a lot of new people in my work. A lot of people who really do not want or need to know about the challenges of raising a child who starts out every morning with a new, creative way to drive me insane (just finished cleaning the carpet after this morning’s redezvous with a bottle of dish soap), but again and again, I find myself oversharing my life. Last week, my dentist innocently asked how my evening had been. “It was basically Hell,” is what I wanted to say, but I held back and offered a tempered version. “Not great. I sat outside Luke’s bedroom door until 1:30 am while he had an epic meltdown.”
I know these honest responses are not really what people want to know when they ask how your night was. I know I should come up with an upbeat response that does not leave people sorry that they asked, but autism dominates my life. I live it and breathe it in some form all day every day. I escape it once or twice a week only to find myself talking about it throughout my work day. How do I express anything about myself or my life without defaulting to autism? It seems impossible to offer a genuine response otherwise. I suppose I could offer up a shallow, doing-fine answer that would better satisfy the social expectation of the question, but if you want to know the real me, you will also know about autism.
Am I Luke’s autism? It is certainly a major descriptor, but I am much more than autism. I am momma to six kiddos. I am more than just an autism mom, I am also just a mom. I love music; I sing and play the piano for fun. I “teach” piano lessons to one student who now plays better than I do.
I like creating things. In my pre-autism life, I was an avid scrapbooker. My oldest three kids have fun books to look at documenting their childhood years. Even Luke has pages of his infant years that are beautifully painful to look at now as they express all the hopes and dreams I had for my adorable baby boy. I like to learn new skills. At the time of Luke’s diagnosis, I was trying my hand at sewing. I even made myself a shirt that was wearable.
Luke’s diagnosis has forced me to change, but I have found new ways to satisfy my need to create. I crochet – a hobby developed largely in response to Luke’s autism because I could carry it with me and work on it as I waited for Luke during therapy. I am learning to draw – also an autism-driven hobby. Luke loves to find pictures on the internet for me to draw, and then he colors the picture. I can whip out a mean air mattress or vacuum, but my skills with the John Deere combine with a wheat header are still in the early stages of development. I certainly wouldn’t identify myself as an artist, but it is becoming a part of who I am.
Learning to be myself amid the constantly changing demands of autism is a battle – a battle that I just couldn’t fight for a long time. I have felt trapped by the limitations autism has put on me as my own person, and I am tired of it. I am ready to begin to find myself again.
Tonight, we spent the evening trying to teach Luke to swallow a pill. He is on a new medication that he must have to control his increasingly violent outbursts, but getting him to take it is wreaking havoc. Our challenge is Depakote – available in happy white sprinkles or syrupy pink liquid. Both options could be presented as downright festive if consumption was based on appearance alone. Since taste matters though, we have delved into the dark art of creative culinary deception. We have made Depakote mashed potatoes with cheese, Depakote burgers, and Depakote quesadills. For a lighter treat, we introduced (with short-lived success) toast with a side of Depakote raspberry jam. With its rejection came the epic treat: vanilla-Depakote ice cream with Hershey’s chocolate syrup – the perfect solution – for about 3 weeks.
Repeated rejection of sprinkles moved us to try that enticing pink syrup in a classic Depakote smoothie and Depakote-laced Gatorade and orange juice. Now he’s onto us hard core. He knows all our tricks, and he is not having any of it. In fact, now he distrusts us so completely he will not even taste the food I give to him. If he didn’t make it, he won’t eat it.
And so it seems we have reached an impasse. If he could just swallow the stupid capsule, our dogged game of cat and mouse could end. So tonight I laid out all the options before him and explained, “Luke, you have to take your medicine, but you can choose how to take it. Here is a yummy Depakote Sunday, a Depakote- Strawberry Gatorade, a syringe of straight up syrup, a pile of happy sprinkles, or a capsule. How do you want it?”
Well, that went over a lot better in my head than it did in real life. He completely freaked out and bolted in fear at the sight of the syringe.
OK. No to the syringe of pink syrup.
With that option gone, we brought him back for further negotiations. He tried the pink drink suspiciously. Nope. That ain’t happening either.
The sunday was up next and rejected just as quickly. Finally, he decided to try the pill.
I have been saving up empty capsules just for this occasion, and we began Pill Swallowing 101 – a course which will take many lessons to master. It quickly became evident that the pills are just too big as a starting point, so I cut up tiny pill-sized chunks of banana as a more reasonable starting point. He actually swallowed three or four of these without chewing them up first. Yay! It’s a baby step!
After about an hour of waffling on how to get at least a part of the medicine down him, we dumped some sprinkles in water and he swigged down the liquid. It was important that he not see the banana “pills” as an alternative to his medicine. It was not a beautiful, eloquent lesson, but I can see that he genuinely wants to learn and was trying.
So here’s to hope! It may be a bitter pill to swallow, but it’s better than a Derpakote Sunday. Huh, who knew?
Five years ago today, I packed up my little 4 pound and 1/2 ounce baby girl, complete with oxygen tanks and tubes and monitors and drove home. I think that day was one of the most overwhelming days of my life. How was I to protect this teenie tiny little being from the dangers of life at the Henderson home? I tried to explain many times to the hospital staff just how much I feared this day, but it came nonetheless. I tentatively introduced Luke to his new sister who was swaddled with care and tucked tightly in my arms. To my joy and delight, his face lit up with the biggest smile; his eyes sparkled and a little giggle escaped from his heart. I eased my grip just a little to allow almost six year-old Luke a little better view of his fragile baby sister. As he peered over her in what appeared joyous rapture, he abruptly slugged her little tummy then smiled as her high-pitched wails erupted.
That first year with baby #6 was the most intense of my life, and I have relatively few memories of actual moments. Just a blur of sleepless nights with Luke and the baby and oxygen monitors constantly beeping, being tugged around as Luke drove the oxygen tank, with baby attached, to get it aligned properly with all the other wheeled vehicles. Life was complete chaos, and Luke was its only master.
Even as I look back at the miracles that blessed Little A, I find myself begging for Luke’s miracle. A lot has changed in five years. A lot is still the same. Luke still terrorizes our little miracle girl. Thankfully, she has a highly developed fight-or-flight reflex. She is bright and sensitive and wonderful. She knows when to steer clear of Luke and how to stay safe when he starts rumbling toward meltdown. Unfortunately, Luke is still the master of chaos and he loves tormenting his little sister. Lately, he has been doing a lot of that.
Today was the day that a medical doctor put words to my greatest fear – you may need to consider placing Luke in a long-term care facility – and my heart is breaking that my head could even think such a thing. I cannot go there now; my little innocent boy has done nothing wrong. And yet it is a thought that has been lingering with me for many months as he has become increasingly violent and unpredictable. The psychiatrist watched today as Luke chased that same little sister around, laughing at her fearful cries, and expressed concern over the effect that a lifetime of this torment might have on her. He posed the great question of my life to me – the question that has no answer – how much do you ask the others to sacrifice in order to care for the one? I don’t know.
I do know that my other five children have sacrificed a lot, but I also know that they know a lot more about real life than other kids. They are strong and resilient; they love and forgive easily; and they are friendly to those without friends. They are all beautiful children and young adults, and living with the crazy chaos of autism in our home is a big part of why they are who they are.
And so, today I am remembering my miracles of the past and praying for a miracle to come soon. Until then, I will make it through this day and celebrate the little triumphs as they come.
Although I knew it was a pipe dream, in a tiny recess of my mind, I will admit that I had visions of Luke and Gizmo becoming instant buddies. I wanted Gizmo to love Luke immediately and unconditionally. This has become a strain on the humans in Luke’s life, so why not see if a not-human can accomplish it. Turns out, however, that dogs don’t like getting dog food shoved in their eyeballs any more than people do. Weird.
In fact, I am learning that Gizmo is almost as human as humans are. He gets scared and cowers in the bedroom when Luke starts screeching; he jumps and tries to run away when Luke unexpectedly lays on the horn while loading in the parking lot; and, he will run away if Luke runs at him. In short, Gizmo is not stupid; he knows when abuse is coming and gets out of the way, but he has never, even once, retaliated when Luke does get him He is a genuinely good dog with a kind soul.
Although we are still working things out on the home front, bonding arena, Gizmo is helping in the community access battle. I try to take the two of them somewhere out in the community every day. Usually this is just to therapy or a quick trip to the convenience store. Gizmo wears his service vest and Luke has a 6 inch leash tethered to the vest. Luke’s job is just to hold onto that leash while I hold a second leash attached to a training collar. Luke has done surprisingly well with it. Where he used to break away, run to the nearest bag of candy, rip it open with his teeth, and shake it out all over the floor, he now focuses on holding onto Gizmo for me. It is not perfect yet, but it is much better than it was.
In training Luke to stay by Gizmo, and Gizmo to listen and respond to me rather than the wild kid attached to the other leash, I walk around the house and community with pockets of treats – right pocket full of dog treats and left pocket full of Luke treats. Any time the two of them have a positive interaction, I give them both treats. When Luke does break from the leash, I eat one of his treats. It is pretty impressive what that kid will do to keep Mom out of his treats!
SIDE NOTE – I quickly learned that this concept of handing out treats for good behavior is actually quite effective training for humans too. On more than one occasion, I have found myself wandering the house, distributing little bite-size candies for random good behavior. “Oh, you washed your own dish; good job, have a treat! You cleaned up that mess? Yay; here’s a treat! Nice job on your spelling homework; here, have a treat.” My little human subjects all respond well, although it feels a little odd treating them all like miniature Pavlovian experiments, and the dental hygienist in me cringes every time I throw that mini cavity-creator their way. END OF SIDE NOTE.
Another hitch in this beautifully concocted training plan we are seeing is that Luke is experiencing a significant uptick in violent tantrums, which we suspect may be the result of too much training with sugary rewards. His sensory sensitivities have been on a rapid rise since before my classic conditioning experiments began, so I don’t think that is the only factor at work here, but it is one that I need to eliminate. Now we are on the hunt for reasonable, motivating treats with less potential to wreak havoc with Luke’s behavior problems. Beef jerky, anyone?
All in all, I would say that I am cautiously optimistic that this whole experiment will be worth the incredible investment in time, money, and emotion. If my goal for Gizmo were only to have a fantastic pet, that mission would have been accomplished many times over. We love him to death; he is well-mannered, sweet, potty-trained, and just as much fun as any pet owner would ever want. He has a ways to go in getting him to really be helpful in the home, but hopefully with enough perseverance, we will get to that point.
You know those crazy stories we have all heard where an unsuspecting woman gives birth without realizing she was even pregnant? I kind of relate to that woman now.
Last Saturday, September 16th, Gizmo and I successfully completed the public access testing required for a dog to become a certified service dog. The test is used to demonstrate that I am capable of handling the dog in public and that the dog demonstrates manners appropriate for public access. He had to be exposed to food in a public arena without attempting to take it, remain sitting while I walked away, stay calm when other animals entered his space, and demonstrate many other skills. Gizmo handled the entire test beautifully, and I was so happy for him! We returned to the parking lot and our trainer, Rob, gave me some pointers in loading and unloading Gizmo. He then handed me the leash and said, “He’s ready to go.”
“Ready to go? As in ready to go home – to my house – permanently?”
Indeed. After discussing some financial arrangements and other details, I loaded up Gizmo and started my drive home in a shocked stupor of thought. I knew this day was coming but had not prepared myself. I was completely unprepared. The house was in its usual state of shambles – a state that I guess Gizmo may as well become acquainted with sooner than later – and I was unsure how hubby and Luke would react. I didn’t know how I would react. I’ve never really had a real pet – aside from a couple of strays taken in and loved for a short time. This guy was literally going to be a new member of the family, and we had nothing prepared to welcome him.
With no small amount of trepidation, I unloaded Gizmo and took him into our home to meet his match. Although Luke has met Gizmo before, we have not done much training directed at bonding the two of them. As I brought them together, Luke threw his arms around the dog’s neck in a nose-to-nose death grip; his eyes lit up playfully and he puffed out his cheeks in his typical greeting to a loved one, then screeched, “DO YOU WANT GIZMO TO DO A BLOWFISH FACE?!”
What do you think, Rob? You down for training this dog to make a happy blowfish face for the man?
We still have a lot of work to do. Gizmo is certified as a public access service dog, but we will still need regular, professional training sessions to help us integrate him into the family. Our greatest accomplishment with the new team is that Luke is no longer trying to poke Gizmo’s eyes out! Booyah for babysteps!
In my childhood visions of motherhood, I would come home to a clean house and happy children who would lovingly greet me with joyful hugs and kisses. Yesterday, I came home and was greeted by Luke, who ran into the kitchen the moment I walked through the door and excitedly declared, “We FART!!”
Why yes, son, we do. I am so happy that you have learned this exciting new concept.
This is just the latest in a string fun, new summertime discoveries:
After listening to his parents speak in church, he came to the sudden and quite vocal realization that, “We don’t pee in the freezer!” (And, yes, he did try it.)
If he wants to get Mom’s attention, a sure fail method has always been to sample a variety of nonfood items. This summer, however, Luke has kicked it up a notch above just rocks, dirt. and dried up manure. Those are just so old school. He knows that if you really want a reaction, you have to get creative! Try some bird poop off the headstones during a visit to the cemetery on Memorial day. A long, deep swig of teal acrylic paint (dumped into a cup for easier drinking) lacks creativity but sure generates a nice little Mommy tantrum. Need a little protein? How about a large, fresh, juicy slug from the raspberry patch? mmmmm!
I can honestly say that my childhood dream did not include having this conversation with my legitimately worried four-year-old daughter at bedtime:
“Are you sure about this, Mom? Are you sure this toothbrush hasn’t been up Luke’s butt?”
“Yes, I’m sure, darling. I throw those toothbrushes away as soon as he brings them to me to smell.”
Ah, the real-life dreams of motherhood: dreams of those beautiful days when I am greeted only by the innocent and excited declaration that, “We fart!”