Sometimes I just want to move. Move freely – without interruption – from point A to point B. All day long, I find myself strategically planning my movements. How can I get from the kitchen to the bathroom without collecting a toddler taking a ride on my feet, an eight year-old clinging to my shirt, and a Luke tugging on my right index finger, directing me to his latest hitching problem. Managing movement is a problem for me in every way.
Luke, on the other hand, has no problem moving freely. After teaching himself to ride a bike, I was chasing my 4 year-old dare devil through the neighborhood, down hills and over bumps that I thought would surely buck him off. They never did, and he relished the freedom to quickly move from our house to Grandma & Grandpa’s two houses down the street.
While I enjoy riding with Luke, we never went far as I was constantly on guard. His fascination with hitches literally drives him to any vehicle that has a hitch. Our ability to really ride freely was limited at best.
Enter our hero, Grandpa. He had the inspiration to design a bike that could be hitched to a lead bike – allowing Luke to pedal and enjoy the movement of a bike ride while the driver in front controls the direction. After many hours of research on what designs are already available and what our specific needs were, he designed a hitch that has been life chaging for us. The hitch attaches to the seat of the lead bike and the front wheel axles of an adult sized trike. The hitch can move side to side, up and down, and can rotate, so if one bike is tipped on its side, the other bike doesn’t tip over.
We ride where ever we want to go now. We can ride to the playground, park, or church. Usually, though, we just ride wherever a whim takes us – up and down the streets of town, safely enjoying the freedom of undeviated movement. Now, if only I could get to the bathroom so easily . . .
Every summer, Luke seems to develop a new and intense enthusiasm. Sometimes these are amazing breakthroughs that I think could lead to a future career; other times, I am simply baffled: stumped by the utter lack of predictability that seems to drive his attention. Last summer, his enthusiasm was pruning shears. He became quite an adept pruner as he helped me trim up the many apple trees that grace our yard. Unfortunately, his enthusiasm simply could not be constrained to our overgrown fruit trees. He needed more, and the possibilities were endless. He quickly discovered that plastic toys were excellent subjects upon which to practice his art of pruning. We responded to that move by boxing up his toys and stashing them away in the van that outlived its usefulness as a vehicle and discovered its destiny as the only closet able to withstand Luke’s attempts to break in. Not to be beaten so easily, Luke upped his game to the radio antenna on our car.
“Oh yeah?” we responded, “We’ll hide those shears on the highest shelves of the garage. You’ll never be able to reach them.”
That little monkey scaled the shelves up to the counter top, climbed on top of the garage freezer then up on top of the shelves, retrieved those pruning shears and hopped back down. Then he did what any logical, clear thinking adventurer would do; he pruned the handlebars off his brother’s scooter, snapped the plastic wheels off his wiggle car and cut the handlebars to his own bike down to size.
We played an eternal game of hide and seek with those pruning shears all summer, but no matter how cleverly hidden, that boys sixth sense for shears helped him sniff them out. Having demolished his primary mode of self-transportation, we spent most of the summer on long drives and visits to the lake.
This year, I decided to take a risk and bought Luke a second hand bike at a local thrift store to replace his trimmed up version from the previous year. Bicycles have become the new theme of our summer. Luke has loved riding bikes since he taught himself how on the neighbor boy’s itty bitty starter bike when he was just four years-old. Lately, I have braved several early morning rides about town with him. Whenever we weren’t riding, he was out trying to figure out what new things he could hitch that bike, and everything else with wheels. His new hitching tool of choice is the C-clamp, a marvelous instrument that can be attached relatively easily to almost any type of vehicle. And then came what I think I could safely call one of the happiest days of Luke’s life. Grandpa welded a real, genuine hitch to his bike! Now he can easily hook any number of yard implements, dustpans and wagons behind him and proudly carry his trailers up and down the driveway. He has even taken to loading three year-old Little A into the wagon and giving her rides.
Moving his implements and its passengers is amazing exercise!
Luke giving Her Royal Highness a wheelchair drawn wagon ride.
Luke checking out his ingenious new hitch
Last week’s riding adventure brought out the sense of humor that I am starting to see Luke develop. While pulling sister in the garden cart, he noticed a puddle created one of the yard sprinklers. With a mischievous giggle he B-lined for that puddle while the sprinkler was turned away then abruptly stopped just outside the wet edge, leaving poor little-A parked as a prime target for the sprinkler. She obligingly howled as the cold sprinkler showered her, and Luke was thrilled. Once the sprinkler shower had passed, he resumed the ride down the driveway and returned just in time for a repeat performance. Then he fell into a rhythm, ride, rinse, and repeat, ride, rinse, and repeat. His giggle unabashedly more proud with each cycle.
Even Little A seemed to enjoy providing the thrill of a screaming fit for Luke’s entertainment. Although I shouldn’t encourage the teasing, it makes my heart happy to see him learning to manipulate other people’s emotions and understand that what he does affects the way other people feel. It is a very basic concept, but that understanding is the very basis of developing the ability to connect with people. And I find it amazing!
“Now! NOW!” The urgent call ripped me from sleep and I took off toward the kitchen stumbling over the laundry basket of clothes as I rounded the corner praying, “Please, not another fire.”
Fire was our Sunday morning activity two weeks ago. Luke and Little A were hanging out in my bed, Luke watching tractor videos on YouTube and Little A fussing because Luke kept displacing her and snuggling up to me. His mischievous smile and sudden bolt from the bedroom should have been my tip off to follow him immediately rather than sleepily giving my bed a thorough pat down in search of my phone. I texted hubby requesting backup then walked out of the room to see what Luke had found to entertain himself.
My first thought as I opened the door was, “Ah crud; he’s melted something then thrown my hot curling iron in the toilet again.”
Nope. Curling iron was undisturbed. I heard Luke’s voice, coming toward me, “Is it a fire?” he asked innocently. The flames were already brushing the ceiling and heavy black smoke billowed toward me. On the bar in the center of the kitchen was the toaster, completely engulfed. My mind raced as I considered my options. Electrical fire; what do I do? Is it safe to throw water on it? I think so; no gas is involved. Just a little cup at first to make sure. I tentatively threw the water at the fire as I hollered at the top of my lungs with all the urgency I could muster. I hadn’t blown up with that first cup, so I started dumping cups full of water on the flames, wondering where the heck my backup was. The kids all started filing upstairs, big ones getting the little ones outside where the air was clear. Finally, hubby appeared. He grabbed a towel, wet it and threw it over the flames, extinguishing it completely.
Toaster remains after the close encounter with a Hot Wheels car and Thomas the train
The wall that Luke insists on stripping bare of outlets.
The what is left of the plug following Luke’s multiple attempts at removing it.
It was all over in a matter of minutes. We opened windows and doors to begin funnel breathable air back into the house. I soaked my burned arm in cold water as hubby investigated the cause of the fire, although we both had a fairly good idea what had happened. Sure enough, in the bottom of the burned out toaster were the charcoal remains of a train from our collection of Thomas the train collection and a metal race car. The damage was relatively minimal. Several 4-5 inch boils and holes in the laminate counter top and a smoke stained ceiling. A heavy layer of soot caked anything that was out in the kitchen or living room, and we were blowing black boogers from our noses for a couple of hours. I had minor blisters on my arm, hands and feet, but we were lucky, and I collapsed and sobbed at the thought of what could have been.
Now, here I was again waking to another untold emergency with panic in my heart. I ran to the kitchen, but saw no evidence of foul play. Then followed Luke’s cries to his bedroom where I immediately knew what he had done. There, on the floor in front of the electrical outlet, was a pair of blackened scissors, and Luke was armed with a kitchen knife ready to go in for another battle. I wrestled the knife from him and picked up the scissors. He recoiled in fear of the scissors that had shocked him.
“What the heck, Luke?!”
We keep the breaker to his bedroom flipped off since the wiring is exposed after he tore the sheet rock off of all of the inner walls. However, he has recently figured out how to flip it back on when we want to use the television in the living room. He must have flipped it on so he could see to operate on his plugin patient. And even after his shock, he was ready to go back in for the kill, blaming the scissors, not the outlet for his pain.
This evening, hubby remarked, “I wonder how many lives that boy has.”
“I don’t know. He’s used up three just this month.”
My boy must have an full army of guardian angels looking out for him. His intelligent brand of stupidity is enough to wear out even the most angelic of guardians.
I scrapbooked this photo along with a message for my Luke back in 2009. As I read it, I couldn’t help but notice how similar my feelings still are, seven years later. The poem was written today. The caption I wrote when the photo was taken, back in 2009. The feelings behind both are written in my heart forever.
March 15, 2016
Sweetest baby boy,
Look up to me innocently.
Your words are taken ‘way from me.
Your eyes, now window to your heart.
Dearest baby boy.
I long to hear, “I love you, too.”
Sweet words, in voice, now gone to you.
But eyes can speak for you, in part.
Where’s the boy I dreamed you’d be?
Where’s the love you have for me?
Give me eyes, dear Lord, that I might see
My tender baby boy.
Gentle baby boy,
Soft hands that once reached out to me,
Spoke words of where you want to be,
Now speak a story undefined.
Oh, my baby boy,
The pain you feel inside you grows.
Those hands now speak in angry blows –
Raw emotions, unrefined.
Where’s the boy I dreamed you’d be?
Where’s the love you have for me?
Give me hands, dear Lord, that I may touch
Little boy, I love so much.
Mama always told you not to point; pointing is rude. However, it is a crazy useful skill to have that is notably lacking in many autistic children. We worked and worked for years to teach Luke how to point with his own finger. His preference has always been to use my finger to point at pictures in books. In fact, he used my hands almost exclusively to communicate until he was about 4 years old. Thirsty? Grab Mom’s hand, jerk until she cannot shake you off any longer, then drag her to the cupboard and throw her hand up toward the cupboard where cups are kept. I remember the first time I saw him point at one of his picture communication cards with his own finger to indicate he wanted something. I did a happy dance and jumped up and down shouting all sorts of joyous jibberish to encourage more of it. Yes, pointing is an awesome skill indeed.
Somehow over the past month, however, Luke has taken to pointing with his middle finger, and he is pretty blatant about it too. A new employee was sitting on the couch in the entry way to his DDA (Developmental Disability Agency). She was so sweet, and asked his name when we walked in. He immediately gave her the bird and started yelling random names at her. “Mariah, Angela, Kristen!” Flipping her off with each name in the list.
Last week as I drove home from a therapy appointment, I glanced over my shoulder to make sure that Luke’s silence was not of a destructive nature. He sat there in the back corner seat, all fastened snugly in his seatbelt, with his finger plunged vigorously up his nose. He was clearly a man on a mission, and I decided it was best not to disturb such important work. We continued driving in rare silence for several minutes. Suddenly, Luke came flying from the back seat, and before I had time to react, his birdie finger with the granddaddy of all nasal deposits was jabbed dangerously close to my eyes.
“Wipe it! Wipe it! Wipe it!” He howled as if the very sight of it caused intense pain. I reached for the closest material I could find to rid him of the nasty buger – a Skittles wrapper buried under the drivers seat. Luke recoiled as I held it toward him to unload his burden. He was clearly distressed and started flipping that buger on his birdie at me again and again screaming, “Wiiiiiiipe it!” He clearly had no intention of desecrating a holy candy wrapper with this nastiness. I continued my swipe and search under my seat until I procured an old worksheet he had completed at school. Finally, a material worthy for this job. His relief was almost palpable as he wiped and rubbed his finger clean.
In retrospect, I should have known better than to even suggest he desecrate a candy wrapper in this way. This child loves all things candy, and will sometimes carry around empty wrappers all day just to look at them. At one point he had a wall dedicated to all the candy wrappers he could collect. He would carefully tape them and reorganize them every day. How silly to treat such a treasure as nothing better than the common buger wipe. After all, even Luke has his standards.
I know; we all have those days when you open your mouth and out jumps your mother. I remember the first time I heard Mom’s voice escape my lips; my oldest was about three and wouldn’t get in his car seat. Before I had time to even think, I heard my Mom say, “You have to the count of three. One . . . Two . . . Two and a half . . Two and three quarters . . . .” I don’t remember if I ever got to three, but I do remember laughing at myself for even trying to make the threat of the dreaded, “Three,” as ominous as Mom did. Since then, Mom has jumped out of my voice box at least a thousand times. Lately though, I have found some degree of humor in recognizing stuff that comes out of my mouth would never escape Mom’s lips:
“Don’t you want to just watch a show? Pleeeease…” Mom is so energetic, she was always pushing us to do something active. As Luke’s Mom, I am the polar opposite. Just sit still for 10 minutes so I can repair the last disaster before you move to the next.
“You have to put underwear on before you play in the snow.” Yes, pants and shoes are optional at this point.
“Can’t you just pick the paint off the wall? C’mon I’ll help you get started.” Hey, it beats kicking holes in the wall…
“If you need to kick a hole in the wall, please do it in the bedroom.” My dear father-in-law and his friend repaired and retextured all of our gaping holes while we were out of town. Not less than 24 hours later, Luke had kicked a hole in the bedroom. Here is a sample of his handiwork about a month later.
“Stop throwing the computer (or printer or laptop or iPad)!”
“I promise your bum is clean; can I please stop wiping it now?”
“Can I bang my head with you?” Hey, if you can’t beat ’em; join ’em, right?
The stress to create a perfect Christmas is mounting. Throughout the year, I periodically dream that it is late Christmas eve and we have nothing ready. Every year, I say I’m going to scale back. Certainly the kids do not NEED more stuff, but in my effort to make sure they all have something that they really want, I end up adopting the buy-one-of-everything-and-surely-they-will-be-excited-about-something approach to shopping. It is utterly ridiculous, but my fear of disappointed children on Christmas morning overrides any common sense I may normally possess.
This year I really have scaled down, and I am nervous as all get out about it. I think we actually are going to stick to it this year for several reasons:
Luke breaks every toy he is able to get his hands on. As I shop, I try to imagine what this toy is going to look like after Luke gets his hands on it. This vision is generally enough to prevent a purchase.
I am scheduled to work the days immediately before Christmas – my prime break-down-and-buy-it-all time.
We are saving money for a special trip to see my sisters and friends in Texas. This is their big Christmas present.
Less presents means less chaos and maybe fewer fits of rage.
Most of all – I remember the lesson 6 year-old T Man taught me last year.
Last year – I had already finished my shopping, but then T Man told me that he really hoped Santa would bring him a real bow and arrow and a remote control car. I panicked and immediately purchased these coveted items, just in case the man in the red suit didn’t pull through on this last minute request. Christmas would be perfect. And it did start out that way. T Man was so excited with the gifts he received. “Just what I wanted!” he cried over and over. Yep, it was perfect . . . for about an hour. Then the remote control car stopped working, another toy fell victim to a rumbling Luke trying to handle all this stimulation, and his beloved bow and arrow that was meant to be his big gift of the year busted on his first attempt at shooting.
Meanwhile, Luke’s rumbling graduated to full on rage when he discovered that all of the candy canes were broken. He had to have whole candy canes, and he had to have them NOW! Of course, we did not have a box of perfect candy canes to offer, so we started desperately calling all of our neighbors, but to no avail. Everyone was off celebrating their own Christmas. In desperation to protect Luke, the other kids, and their brand new toys, I began sewing the straight jacket I had been planning to make for Luke. (Now, this might seem harsh to some of you, but Luke is a sensory seeker and often pressure of being wrapped tightly helps autistic kids calm themselves.) Unfortunately, I also learned a lesson about sewing self stick velcro with a machine – don’t do it.
T Man innocently begged throughout the day for someone to play Rampage with him. He had been introduced to this game at a family reunion in July, and my amazing sister and her awesome hubby surprised him with his own game for Christmas.
Tension was high as the raging continued, and Thomas was continually dismissed in our desperation to stop it.Finally, after hours and hours of raging my sweet sister-in-law came to our rescue and procured for us an unopened box of perfect candy canes which we immediately presented to Luke. His eyes widened and a smile crossed his face as he tore into the box and broke every single candy cane. Are you kidding me? He just had to be the one to do the breaking.
Having fulfilled his need to break candy canes, Luke began to calm and was soon sleeping a heavily drugged and exhausted sleep. The relief that sleep provided is simply indescribable. Thomas retrieved his game and we played for a couple of hours before bedtime. As I snuggled up with my sweet, innocent boy who I felt had endured such a painful holiday, he hugged me and whispered in my ear, “This was the best Christmas ever, Mom.
So this year as the temptation to buy up every toy in the store mounts, I keep reminding myself that my boys best Christmas ever happened on a day that all of his gifts broke and his mom played a game with him. His heart really wants my time and full attention, not a pile of new toys. Remember, remember, remember.