Autism Awareness in Action

April is National Autism Awareness Month – a month which is designed to make the general public more aware of the prevalence of autism and the challenges associated with an autism diagnosis. At this point, I think you are probably in the minority if your life has not been touched by autism to some degree. Autism awareness is at an all-time high, and it shows in the small acts of kindness we receive almost daily. Today, rather than demanding that you be more aware of autism, I would like to let you know that I am aware of your autism awareness.

You demonstrated that awareness when:

  • You offered Luke a friendly, “Hello!” with a fist bump, even after your last interaction ended with a kick in the shins.
  • You only said, “I understand,” after Luke flattened your beautiful little baby girl when she toddled within a leg’s reach of Luke. You shook off my profuse apologies and focused on comforting her rather than berating me and my boy.
  • You came and sat by Luke in church while my husband was home with other sick kids. Just the presence of another adult in his space made all the difference in his willingness to sit through church.
  • You drew a picture for Luke – a picture of a smiling boy labeled, “To: Luke From: Your Friend, XXXX” Nothing brings more joy to this momma’s heart than to know that Luke has friends at school. You chose to brighten his day with a picture, and in the process, you brightened mine too.
  • You stepped in front of Luke as he sprinted away from me during our visit to the local thrift shop. His headlong run for the toy section was not going to end well. Not only did you stop him from escaping me, you carried my purchases to the front of the store for me, put a hand on Luke’s shoulder to anchor him while I checked out, and then helped us to our van.

At a time when the world is demanding that you understand more, give more, and do more for autism, I wanted to let you know that you are more – more understanding, more sympathetic, and more kind. You are autism awareness in action.

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Not That

I have eight siblings – six of them brothers. This means I grew up fighting. Not knock-down, drag-out, beat-your-guts-up kind of fighting (ok we had a few of those too), but slamming, arguing, I-hate-your-living-guts kind of fighting. Whenever we were on the losing end of such a battle and desperation set in, we needed to communicate that the offending sibling was, “the pus that infects the mucous…that cruds up the fungus…. that feeds on the pond scum.” Lacking the eloquence of Michael O’Neill in My Best Friend’s Wedding, we had a word for that – Retarded. It was the low point of any argument, and generally a signal that any substantive debate was now thrown out the window.

Last week I had a conversation with a man I have been working with for over a year in an effort to help Luke. He is the parent of a grown child who has special needs, although I do not know the nature of her special needs. Over the course of our discussion, I asked about a business she had become involved in. The response I received from him jarred me to the core and made me question everything about doing business with him. He called into question his daughter’s ability to provide the service she was offering through the business, and then went on to say, “Let’s face it, she is a retard.”

“She is a retard.”

Now, let’s just leave that hanging there for a minute while I explain. I am not one of those overly-sensitive, politically-correct people who gets involved in debates over whether Luke is called, “autistic,” or, “a boy with autism.” (And, yes, for those of you outside the autism community, this is a very real debate.) As a general rule, I think our society often makes too much of missteps in verbiage, and many of us take offense where no offense was intended. Honestly, I think a lot of society today just lacks the education to know how to refer to different groups of people without causing offense – myself often included.

Indeed, most of the times I have heard this particular term used, it is by immature children or teens. It is not a nice word no matter how it is used, but I can usually chalk these instances up to pure ignorance or mean-spirited fighting – like my own use of it during sibling wars. Generally, it is used by typical kids who need to be taught about the damage their words can inflict.   I am not sure how the parent of any child – let alone one with special needs – could possibly be ignorant of the incredibly derogatory connotation associated with calling another human being a retard.

I was so shocked by the flippant reference, that I simply did not react. We finished the conversation, and I just let it sit there to consider over time. Generally, when things like this happen, I mull over the comment and come to realize that it’s not such a big deal, that the offending party was ignorant or that I simply misunderstood. Not this time. The more I sit with it, the more repulsed I am. I know he was trying to make a point that was salient to our conversation, but it was so callously uttered, with such complete disregard of his daughter, that it replays negatively no matter how I try to reframe its context. If this man would say this of his own child, what must he think or say of Luke? I can only imagine the words he has used to describe my boy.

In the nine years since we realized Luke was not just a typical boy, I have used many words to describe his behaviors. He has been challenging, frustrating, and aggravating. Sometimes he has been mean and violent. He has even been down right annoying, but NEVER a retard. Luke is not that. This man’s daughter is not that, and no person should be labeled as such for a condition which is beyond their control.  If we cannot speak with understanding, at least let us speak with compassion.

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.

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.”

In Case You Ever Wondered . . .

Anyone who knows me well knows that I am a bit of a Facebook junkie.  I love sharing bits of my life with family and friends I am unable to see or talk to regularly.  However, I have noticed that I often use Facebook as a vent for the frustrating days we have with Luke and seldom do I really share what a beautiful soul I have the honor to raise.  For example, Luke has developed a new attraction to cutting things up.  Here are a couple of pictures that I posted to Facebook:

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Last week: my knitting cord cut and ripped out of the sweater I was working on, my earphones

 

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Today’s casualties: my sweater, hours of work on a crochet project, charger cord, and his little brother’s prized Valentine box

I am so quick to share the aggravating moments, but often fail to share the sweet ones.  So, in an effort to counter all of my whining posts, I want to share this beautiful one.

Last Saturday was almost magical. Luke was a sheer delight to be with. He painted all the pieces to the wood tractor with very little support. He was so patient and even waited for one coat to dry before putting on a second coat. After all the pieces were painted, he used screws and a screwdriver to assemble it. All I did was start it through the hole. That project took a couple of hours and he was so attentive and excited about it.20170225_155444 After we finished, he found some pics of tractors we had printed out and spent the next few hours painting them. It was a beautiful and magical day – almost like a window opened to the sweet little boy trapped in a generally uncooperative body. 20170225_155332.jpgLest anyone ever think otherwise based on my frustrated posts, I adore my boy. I love him with all my heart and just yearn for more days like these!

Left or Right?

Left or right?  I sat at the intersection pondering the lasting consequences this decision would have.

It was December 2015 – a particularly harrowing month to be living with Luke.  Luke does not just enjoy summer, he requires it to be happy.  He needs the movement outside to burn off energy and soak up happy emotions.  By December, with both exercise and vitamin D limited and Christmas chaos and candy abundant, Luke had become completely unmanageable and violent.  One day, Little A – then three and still very small for her age – tripped as she bopped along with the kids coming in from school.  Without warning, Luke was at her side, stomping on her head and laughing uncontrollably.  He probably only landed one or two hits before my teenage boys saved her, one tackling Luke, the other blocking her from the blows, but the image was seared into my brain.  My little girl suffering under the feet of her much larger brother who mindlessly acted on every passing impulse.  He was growing so quickly; how would I ever protect her when I no longer had the older boys to intervene – when his body looks like theirs? Six feet and 200 pounds of uncontrolled emotion was a fear that I just could not imagine.

Life at school was not much better.  Although we had hit the jackpot of loving talent in a new behavior interventionist (BI), Erin, the special education teacher simply did not have the temperament to handle my volatile boy.  Whenever Erin was gone, his behaviors with the teacher escalated.  He knew how to push her buttons and did so freely.  Breaking away and running from her, pushing and hurting other students, intentionally ripping breaking his classmates’ eyeglasses, dumping and breaking school supplies, smashing the box that holds the fire extinguisher.  After enduring months of his abuse, the teacher finally broke.  She just could not work with Luke any more.

I am not sure the specific event that led to the drive I was on with my Luke.  I know it had been another rough day at school and he would.   not.   stop. screeching – the fingernails-on-a-chalkboard screech that just grates on sanity.  In desperation, I loaded him into the van; it was the only activity that had ever reliably calmed him.  We drove and drove and drove.  Slowly the screeching faded into wimpering and then to blessed silence.  As I pondered our situation, I became completely and helplessly overwhelmed.  Endless drives day after day simply could not continue, but it was our only calm from the storm.  Suddenly, a thought came to me that promised to protect the people I loved and end the endless frustration. . . .

I have struggled with depression, probably, since I was a teenager.  I have had suicidal thoughts for a good part of my life, but these thoughts were always outside the boundary of my reality.  They would pop up unexpectedly without provocation, but they were not my reality.  I am a happy person; I would not ever DO the things that just popped into my head.  This day was different though.  I suddenly had a moment of complete clarity – a solution to this unsolvable problem.  If he only wanted to drive, then we would drive.  Just up the highway from our house the road rounds a corner that is precariously close to a rocky ravine.  As a kid, I was terrified of rounding that corner, but on this day, it seemed like a small ray of light.  It would be so easy to just keep straight.  We would leave this problem behind us, together.

It was in this frame of mind that I stopped at the intersection near home.  With puffy eyes and a broken heart, I pondered my direction.  Left or right? Left would take us to a permanent solution.  Right would take me back home to endure more of the never ending screeching and violent, destructive meltdowns.  I turned right; that option would still be there on another day; it would always be a choice I could make later.  I will make it through this night first.

I was scared: scared that I might actually do something that would hurt so many people I love;  scared that I had moved the ever-present suicidal thoughts from the buried corners of my mind to the forefront of conscious consideration.  My rational brain knew it was stupid, but my emotional brain just kept reliving the option.  Was I going crazy?  How could I trust myself to take care of Luke when I had actually considered this awful thing?

While dropping Luke off at school the next day, Erin and I were trouble shooting possible triggers and solutions for the behaviors we were seeing.  Next thing I know, words were tumbling out as I recounted the previous evening’s experience.  I am not sure what I expected – perhaps a horrified gasp or a stunned reprimand.  What I didn’t expect was her calm response, “Shanna, I would think you were crazy if you didn’t have thoughts like this.  Look at what you are going through.”
Erin’s background is in social work; she has helped truly troubled souls move to a better place.  She has more love for lost souls than any person I have ever known.  She has known and loved people who have actually followed through on these haunting thoughts.  Her reassurance that I was not a failure or a danger to my son buoyed my spirit and gave me hope that this was just a passing valley in a vast and beautiful landscape that was unfolding.  It was a reminder that we are allowed to suffer in order to more fully experience joy.  Yes, Luke’s low times still bring me great sorrow and concern, but I cling to the knowledge that my boy will be back; other days will be brighter, and my view will be all the more beautiful for having known the darkness.
Left or right? I chose right.