I Am Me!

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.

Autism is my life, but it is not me.

Advertisements

Culinary Deception

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?

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.

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.

20170927_174224.jpg
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.

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!”

 

 

LUKE – I AM YOUR FATHER

While I was still pregnant with Luke and considering names for the perfect, little boy that would soon be joining us, I remember distinctly the moment that the name Luke popped into my head.  I was stopped at a stop sign in our tiny little town on my way home from grocery shopping.  Suddenly, I just heard it in my head, “Luke.”  That is a very nice name and I think it meets all my criteria.

  1. I have never dated a Luke.
  2. It is short.
  3. It doesn’t rhyme with any derogatory words.
  4. It will not be mispronounced.
  5. It is common enough to not be weird, but not so common that three kids turn around every time I call his name.

I took the idea home to my husband.  Who immediately agreed.  The name had also come to him.  Of course, he had a much more practical reason for liking the name.  “After all,” he said, “I have always wanted to say, ‘Luke, I am your father!'”

And so it was that Luke came to be Luke.  We knew Luke was perfect when he was born.  His life was a miracle. We loved every piece of his 5 pound, 11 ounce body.  We watched him grow and waited eagerly to introduce him to Star Wars so he could meet the hero that inspired his name.  As time went on, though, we began to realize that our perfect son may not ever understand the humor in his Daddy’s words, “Luke, I am your father.”

The unfortunate fact is that the movie Star Wars is notably lacking tractors of any kind.  Now if our hero, Luke Skywalker, were to fly through space in a John Deere tractor battling evil farmer clones in combines, Luke might be convinced to watch.  However, since Luke prefers harvesters to jet fighters and perfectly hitched fertilizer sprayers to witty robots, we reconciled ourselves to the hopelessness of introducing our Luke to THE Luke.  Until today.

Unlike Luke, Thomas loves all things Star Wars, so he was elated when I offered to let him watch one of the DVDs on my laptop today.  Not long after the movie began, Luke bounded into the room, and I thought, “Well, that was fun while it lasted,” knowing the battle that would follow.

However, instead of pushing away his loud, aggressive, older brother, Thomas excitedly invited Luke to join him.  “Luke, you wanna watch a show with me?   The hero is Luke – just like you!  C’mon!”

20170409_144259Luke happily plopped himself next to his brother.  They hugged for a few minutes and then resumed the movie.  Luke lost interest after a few minutes and has been in and out of the room many times, but each time he returns, he is welcomed by his little brother who pauses Star Wars long enough to love on Luke.

Who knows, with enough loving invitations, maybe Luke will understand the story someday.  After all, “The force is strong with this one!”