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.”

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.

 

Kumbaya?

“How do you spell, ‘penis’?”

The question posed by this seemingly innocent elementary school student jarred his teacher to attention.  The class had been asked to draw a picture about their lives, and the fact that this was his student’s choice aroused immediate concern and suspicion in the conscientious  teacher.

“Why do you want to spell that word?” he asked, fearing the response.

“Well, you see, I drew a picture of a rainbow and I want to write, ‘happiness,’ under it.  I have the, ‘hap,’ but I need the, ‘penis.'”

This was just one of the many stories shared during a four-day retreat for special needs mamas that I attended last week.  It has been years since I sat up late swapping stories and laughing with friends. I seriously felt like a 13 year-old girl again, and it was beautiful and healing.

By nature, I am a fairly reserved person.  I am not comfortable in large groups of strangers; I have even been known to develop a last minute, “illness,” when I feel pressured to participate in social groups.  I was tempted to back out of this one too, but others had been turned away from the opportunity.  I could not intentionally skip out on it.  Sometimes those nagging feelings of guilt and responsibility really  do save me, and this was one of those times.

I entered the room with an overwhelming sense of trepidation. “Please don’t make me hold hands and sing, ‘Kumbaya,’ with a bunch of strangers,” I silently prayed.  I was one of the last to arrive and had missed several of the introductions already.  The group was busy making Journey Boards – scrapbook pages of themselves and their journeys that landed them here.  As I hurried to catch up, I became overwhelmed by the lives of the women surrounding me, and I immediately realized I had entered a room of sisters, not strangers.  These women had faced and conquered struggles that I cannot even imagine.  Loss of husbands, abusive husbands, children with multiple diagnoses, and multiple children with special needs.  By the time I had my board prepared to share, I felt nothing but pure joy for the life I was blessed to have, and this was only the first hours of a life-changing event.

Over the next four days, our group participated in courses tailored to the significant challenges that come from raising special needs children.  We were taught about working with our schools to develop amazing IEPs (Individualized Education Programs – not plans – see Lana I remembered something :).  A local chiropractor volunteered his time to discuss chiropractic options to treating our special kiddos.  We learned about resources available through Medicaid and other charitable organizations.  Did you know that Idaho Falls has a group that is dedicated to finding bicycles that work for our special needs kids?  Neither did I. Amazing!  And that was just the tip of the iceberg.

We learned about the importance of taking care of ourselves and putting priorities in proper perspective.  Later in the week, a certified ABA therapist provided training on handling many of the challenging behaviors we see every day with our children.  I had more questions answered in these four days than I have in all the years of being Luke’s mommy.  I came home on fire with new ambition and drive to make changes in Luke’s care that will help him develop to his full potential.  More than that, though, I came home with a new network of support, new friends living with parallel challenges, new skills (and no, ladies, painting is not among those skills), and new perspective.

Thankfully, my prayers were answered.  Although we did have one very close call, we were never required to hold hands and sing “Kumbaya.”  I would say, however, that I do have more of a Kumbaya spirit now.  A huge thank you to all of the many, many people and organizations that contributed time, money, and effort to make this possible.  Every one of you contributed to healing this stressed-out, tattered mamma.

 

 

 

A Straight Jacket Christmas

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:

  1. 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.

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    The Christmas tree is one of Luke’s recent victims.  It has been flipped over at least half a dozen times.  I gave up fixing it until he is in bed on Christmas Eve.
  2. I am scheduled to work the days immediately before Christmas – my prime break-down-and-buy-it-all time.
  3. We are saving money for a special trip to see my sisters and friends in Texas.  This is their big Christmas present.
  4. Less presents means less chaos and maybe fewer fits of rage.
  5. 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.

 

The Kindness of Children

 


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Friendship – it seems so simple that we generally don’t even consider the skills necessary to make and keep friends.  We all want our children to have friends and feel accepted by society, but how will Luke ever make friends, let alone keep them, when he cannot control his violent impulses?  In just the last month, he has snatched and broken the glasses of two of his schoolmates.  When he gets over stimulated, he barrels over anything in his pathway, leaving a trail of broken objects and crying children.  I absolutely understand why other children would be hesitant about being friends with such an unpredictable and volatile boy.  When Luke started school, I worried that he would be subjected to bullying by his neurotypical peers, but thankfully, those instances have been exceptionally rare.

Last year, while he was using the restroom, one boy dared another to pull Luke’s pants down, which he did.  Of course, Luke has no understanding of social impropriety, so he could have cared less.  A third boy, however, witnessed the incident and immediately reported it. The school addressed the issue promptly with the boys and their parents.  Since that incident, I have not seen or heard of any cases of bullying or even teasing Luke.  In fact, I am truly in awe of the tender hearts of Luke’s classmates.

11676On Luke’s birthday, his classmates each made him an orange birthday card with sweet messages of love and acceptance.  His teacher had Luke sit on a stool at the front of the class while each child brought him a special birthday wish in the form of a bright orange birthday card.  And these were not just the obligatory, have-a-great-birthday kind of wishes.  Several wrote detailed letters to him. Here are just a few of the sweet messages from his fellow third graders:

Dear Luke:  Thank you for being my friend. I am so happy you are in my class.  I hope that you have fun playing with me because I have fun with you.  I really like it when you smile.  I really like playing with you at P.E. 2015-12-19 17.34.26I had a lot of fun with you on the scooters at P.E. last week.  I really like helping you with your work.  It is really nice to know you.  I hope you have an amazing birthday.  It is a lot of fun playing with you.  I hope you feel welcome in the class because we all love having you in our class.  From, xxx

Dear Luke:  You are the sweetest little boy ever.  You always make me smile when I see you.  You always make my day because you are so so so so so so so sweet.  I sometimes see you at church and you are very reverent.  You are learning a lot of new things and you are smart.  You are really nice and polite to others.  I love when you come into the classroom because I see you and it makes me so so so so so so happy?  And I wish you a happy birthday this year.  I hope your happy being nine.  From xxxx

Happy Birthday Luke!  I hope you have a good time.  Your a cool kid and your funny.  Your a smart kid.  Thank you for coming in our class.

I am simply amazed by how accepting children are of Luke, and I pray with all my heart that they will continue to love Luke despite the ever-widening gap between their development and Luke’s.  Surely, Luke will face rejection as he ages.  I pray that, when that time comes, he will remember these tender years when the children not only accepted his differences, but welcomed him whole-heartedly into their circle of friends.