Miracles – Past, Present, and Future

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.

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Let It Go

 

Well, this morning I spent at our local thrift atore looking for a few things to pull together a Luke Skywalker costume for T. Little A came with me, dressed up in her Princess Elsa costume. As fate would have it, “Let it Go” started playing over the speakers, so the sweet patrons of Deseret Industries were treated to an impromtu performance by Elsa herself. She just belted it out down up and down the toy aisle as she hunted for a treasure to bring home. The entire store paused as she sang, and it was just so sweet! When the loud speaker interruped with an announcement over the music, you could hear a collective and disgruntled sigh for interrupting the performance.

After it ended, a lady came up to Ayla to say thank you for brightening her day with that song. She gave her some coins and a princess puzzle that she had picked out to buy for her. As she turned around, I recognized the sweet face of my dear high school friend’s mom. I knew this woman well! She filled me in on my friend and her Grandma who lives up the road from us. Her grandma now has dementia, but is still physically strong so it has been a great challenge for her to give her the care she needs. As she shared the struggle of guilt and pain in deciding how best to care for her mom, I felt the same feelings relative to Luke.

How do you know when you have done enough or when you need to push harder? How much can you ask the family to take? Of course, we did not resolve these issues, but I found strength and love from another person who shares similar struggles. As we left, she hugged me and said, “I’ll pray for you and you pray for me, ok? Whenever we drive by one another’s homes, we can both pray for each other and know that the person in that house is fighting a good fight.” It sounds gloomy and dismal in words, but I needed that connectiom today and the Lord made it happen through our little Princess A singing, “Let It Go.”

Update on Gizmo – With a Side of Pavlov

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.

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This is actually not a very good picture of how we normally work the Luke and Gizmo. In fact, this pic was taken just a minute before Gizmo took off down the mountain after a rock that T threw. Can’t take the retriever out of the dog! Because I am usually the picture taker, I don’t have any pictures of us actually out an working the way we typically do.

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.

BooYAH for Babysteps

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 wp-image-933974955meet 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!

Fears and frustrations

Unsettling fear and frustrations have taken up residence in the the front of my mind this week. I have become quite adept (with the help of medication) at filing unwarranted fear away to rarely visited recesses of my mind. Unfortunately, this week has brought paranoia to a screeching halt – front and center in my thoughts.

Lack of sleep, I am sure, is significantly contributing to my current state of mind. Luke’s sleep has become sporadic again. He regularly cycles through periods of good and bad sleep, but what makes this period so frustrating is the concurrent lack if impulse control. He has taken to tossing the computer, monitor, and printer overboard as a sure fire alarm to get Mom’s full attention. It is amazing how much a computer can withstand, but I think he delivered the final death blow this afternoon. Luke has reverted to lots of smaller challenges that add clutter to my mind and my house:

  • He throws canning jars and other glass dishes in order to experience the visual joy that transforming something whole and useful into thousands of glittering shards offers.
  • Emptying fluid-filled containers on freshly mopped floors is back into the daily routine. The stickier the better – entire bottles on dish soap on a tile floor makes for a slippery visual treat – especially when unsuspecting mom goes for a slide!
  • Even better, combine the two for a great reaction by shattering an unopened two-quart jar of apple cider for sticky and glittery shard appeal.

All of these are annoying and frustrating, but the greatest fear has come from Luke’s newfound skill of starting vehicles. This afternoon, Luke took the keys from the fireplace mantle and started the minivan in the garage. Tuesday, Luke slipped out of the house and went up to my parent’s where the farm equipment is stored. This is nothing new for him. We often walk up together and just sit on the tractors, combines, and trucks. It has served as a reward for good behavior. However, this time he went on his own and actually started several tractors and the combine. Without much effort, these powerful machines could have been put into gear with disastrous consequences. Thankfully, two employees were close enough to stop him before any damage was done. He discovered that this new skill creates a frenzy that only reinforces his desire to repeat the behavior – which he has done several times with less success since Mom’s paranoia has not allowed him to get much of a head start. He has found moments though. I cannot go to the bathroom without specifically assigning a sibling to watch him. His most successful run happened while I was distracted by checking up on reports of then Tropical Storm Harvey, who was parked over Port Arthur, TX and my oldest boy who is serving a mission there and is still holed up in his apartment as a result. Luke has an impeccable eye for when I am most distracted and takes advantage of that.

And so, I sit here with Luke pinned under my right leg for his safety and my sanity. I write to clear my brain and hopefully devise some great plan to discourage future incidents. Right now, punishment by utter boredom is the best I’ve got. Feel free to comment if you have inspiration that I lack!

We Fart!

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.)

20170713_205600If 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!”

 

 

Unfortunately Fortunate

3476Fortunately, I have a sweet ten-year-old son with autism.

Unfortunately, a significant manifestation of his autism is a glaring lack of impulse control.

Fortunately, Luke discovered a love for building vehicles out of wood kits.

Unfortunately, the wood must be painted.

Fortunately, Luke loves to paint.

Unfortunately, I turned my back.

Fortunately, he only emptied two containers of acrylic paint.

Unfortunately, black and John Deere Green do not match my kitchen floor, even if the footprints tracked around it were kind of cute.

Fortunately, Luke knew this had to be cleaned up and tried to do it by himself!

Unfortunately, he’s not very good at it yet.

Fortunately, he obeyed immediately when I told him to go wash up in the bathroom.

Unfortunately,  a brand new container of hair spray was left out on the container.

Fortunately, he left the hairspray alone.

Unfortunately, he opted for the Vaseline instead.

Fortunately, he washed his hands.

Unfortunately, he unloaded the entire Vaseline container into the sink drain.

Fortunately, Luke recognized that he needed to change his painted clothes.

Unfortunately, I have not done laundry and his backup pair of shorts was not clean.

Fortunately, he looked for his gray shorts.

Unfortunately, he looked by dumping out all of the clothing in the laundry room – both clean and dirty.

Fortunately, he found a pair of pajama bottoms as an adequate substitute.

Unfortunately, his search resulted in a 3-foot-deep sea of laundry.

Fortunately, I don’t mind folding laundry.

Unfortunately, I didn’t know the water in the bathroom was still on.

Fortunately, my husband heard it.

Unfortunately, Vaseline makes an amazing hydrophobic plug.

Fortunately, I am very experienced in flood cleanup.

Unfortunately, water was already pouring from the ceiling in the basement, filled the vanity drawers, and created a very effective wading pool in the bathroom.

Fortunately, I now have clean drawers.

Fortunately, laundry is now all sorted and clean clothes are folded.

Fortunately, my kitchen floor got a nice wipe down.

Fortunately, I love my son!