Luke’s Life

My autistic son Luke never ceases to amaze me.  This fun photo of him sitting in his favorite rocking chair creates a look as if he does not have a care in the world.

I often think about the impact autism has on our medical and governmental communities including, but not limited to social workers, physical therapists, special ed teachers, speciality physicians , behavior therapists, and social security experts.  As I focus on the twenty six years I have vested in my gorgeous son and his journey,  I vastly underestimated how much would go into all that we have aspired for Luke.  Looking back, it is hard to think about all those years, but know this it was an honor for me as Luke’s mom to give him my best and find all the resources I did.

The Organized Writer

You ever wonder what the most touching blog posts are written about especially those that always bring back your audience for more? By having a blog and developing a number of readers over the years who have in many instances stayed in touch with me through email, Instagram, or Facebook , I have found that my platform strategy in writing is utilizing my personal life experiences.  For example, I have worked over the years to deliver topics around my son Luke who has autism and the many struggles that have followed us through various experiences.

What is Voluntary Placement?

My autistic son Luke was discharged recently after a month in a Washington State King County Evaluation and Treatment Center.  My understanding is these treatment centers are partially funded by the State of Washington.  They do short-stay commitments for clients who present with severe mental illness.  Luke has now returned to voluntary placement, although with extreme changes that include living in a hotel!

Me Who

The school hallway was packed with students.  Working my way through the corridor to my next class, a boy grabbed me in my crotch.  I turned my head around quickly to see the perpetrator.  It was shocking to me that anyone would even consider grabbing me in that region of my body.

Me Who?  The world was a different place back then. Who would care about me?

Psychosis Or Normalcy

 

Luke is calmed by the use of watching movies or listening to music with his headset. It works wonders when his autism seems to be making him upset. How many of us do not have autism and are relaxed by music?

(Disclaimer: Original post written 12/2012). When I was growing up, mental illness was shunned.  We did not talk about it in my household.  The first time I was exposed to the  mentally ill was when I visited my two aunts at their job. They were nurses in a mental hospital for chronic patients in Kentucky.  As a young girl of 17, I was immediately drawn into the strangeness of this new world. ( Today a person would not be allowed to visit like I was able).

Whose Approval Do You Desire?

A kiss from my autistic son

 
Do not ask my son for approval. People stare at him sniffing my hair and he could care less.  The acceptance of God in our lives is not dependent on humans.   

Sitting at church today,  it struck me how critical humanity can be towards each other. I watched an elderly man act out.  He disgreed about some dialogue. I sat quiet. How many times had I opened my mouth? How about thinking it, but not speaking it?  Words spoken or not can divide. 

I travel a lot.  Getting out of my comfort zone brings me to different cultures and diversity. I enjoy meeting new people. Communication is key.  I find a smile is most inviting.  It is the best kind of approval. Maybe. I am happy.

I think upon myself and wonder how hedonistic I may be. That deep seeded place thinking only about being happy as my greatest approval factor.   Can you relate?

Hiking the Issaquah Alps!

Do I need to look to the skys for my answer? Yes, and I also know my approval rating needs to be more like how my son looks at being accepted. It is with no thought of what others might think. 

Let it go.  Close my eyes and sniff away like my Luke!  There will I find peace in God. 
  

Gathering

The arts mean more to me in my 50’s than any other previous decade of my life thus far. It may have to do with the fact I did not have as much time to appreciate and embrace human creative skills and imagination.  I truly believe that the arts are meant to make us better people because of their beautiful and emotional power.

For Luke

Luke watching his brother at Little Bit Therapeutic Riding Center!

Ten years ago Luke was nominated for NARHA Child Equestrian of the Year. Here is a letter giving voice to Luke as a horseman:
How do you describe a rider like Luke? His impish smile, his sense of humor, his serious, quiet moments…actually, he is a very typical 9-year-old boy. But he is autistic and when he rides at Little Bit, he lets us, his volunteers, into his world. He has opened up to us and shared his world with us. In return, we have taught him about horses, and riding, and control.
Two weeks ago, I was able to teach Luke to lead his horse on his own. In the past, I stood between him and his steed, J.R. Luke would take jaunty steps, lag behind or run ahead. That Thursday night, however, I handed him the lead rope and coiled it carefully in his hand. With his other small hand on the lead, I gave him the control. He walked with J.R., matching his steps and stride.
Luke has learned a lot about control since he started riding at Little Bit. He used to need reassurance that he would see mom or dad after class-depending on who brought him-as the ritual would begin each week:
“Go see mama? Go see mama?” he would ask with concern, as his eyes darted from his instructor and back and forth to his side walkers.
“Mama later, Luke,” Andrea, his side walker, would reply in her calming voice.
Sometimes, he would get pretty upset and agitated at the idea that mom or dad was not at his side at that moment. As time passed though, he would mimic the whole conversation, reassuring himself that all was OK in his world. “Go see mama”!…Mama later!” He would recite over and over.
I have volunteered at Little Bit for over ten years, and worked with many riders and volunteers. This rider has provided staying power. Luke has brought three of us volunteers together as “Team Luke.” I usually lead, and Andrea and Michelle work as side walkers. We are actually in danger of losing our volunteer jobs as Luke masters his riding skills and refines his balance. He is taking control.
I think that is what has been so special about Luke. He is so charming that his three volunteers keep coming back for him, season after season. We have all formed a bond that will be broken by the very fact that he learning and progressing each week. That is the good news and the bad news all rolled together! We have seen the progress and the great work his instructors do with him. Our goal is for Luke to have full control of his horse. He will get there; sooner than later. In the meantime, however, he highlights the week for me, Andrea, and Michelle.
We are looking forward to summer session, as that is the last time we will be together as the “team.” Michelle will head off to college in the fall. And Luke will probably not need side walkers by the end of this next session. But for now, I will treasure the trail rides, the obstacle courses, and the warm up sessions of “Head, Shoulders, Knees and Toes.” He has touched our lives and in turn, we hope we have touched his!
A special thanks goes out to Helene, Andrea, and Michelle for making beautiful memories for me.
For information go to this link: http://www.littlebit.org/

Journey

My journey over the past two years reminds me that life is full of variety. As I reflect on life’s travels, we know they can be emotional, tragic, comic, or perhaps a blend of them all. The unending thought in my mind is that the journey means nothing if we don’t share in it together. I realized for quite some time and after several folks in my life affirmed this with me that perhaps my writing could be of benefit to others. If it was not, I speculated it would be good for my family. The key is that we exist to provide an outlet to raise our shared consciousness. While you are reading , my hope is that you would take time to think over my experiences and come to a point in your life to delve deeper in your own.
One thought crossed my mind that what I write or have written about would remind you of yourself and relationships you have with your partner, children, friends, and any other person in your life. I am intentionally wanting to be thought-provoking even if at times it is bittersweet. Perhaps you may be even relieved you are reading about my life and not your own! Yes. That did cross my mind.
As a mother of a grown autistic son who is truly beautiful , I would not wish this life on another. Luke is the most amazing son a mother could ever ask for, but to watch his suffering at times is incalculable. Yesterday we took him to his best friend’s viewing and funeral who just so happened to be autistic too. Luke’s time saying goodbye to Isaiah was truly poetic as he knelt in the casket and whispered gently in his friend’s ear goodbye.
It was during the funeral that I thought Luke would not be able to hold it together, but he did. As we approached Isaiah’s mom, Luke spoke to his mom and said what little he knew to say, “Isaiah.” After a few seconds he than said to her, “Sad”. Isaiah’s mom quietly allowed Luke to speak and reminded him if Isaiah was here, he would want them to laugh. When she said that they both laughed loudly together. It was a moment of reprieve for a grieving mother and Isaiah’s best friend.
Today I thank Luke and Isaiah for showing the true meaning of friendship.

Brain Trippin’

Luke during a research study of his brain.

Did you know the bigger your head is the smarter you are? Perhaps you have heard that the more bumps you have on your skull means your IQ is flying off the charts? These were the ridiculous questions once pondered by those who studied the science of the brain. We have come so far is really an understatement. In fact it is clear our century is bringing new brain research to a whole new level.
This research does not come cheap. There are many places we can donate our money including Michael J. Fox’s Foundation or the Autism Society of America. As a brain tumor survivor and a mother of a son with autism, I am keenly aware of the essential need to cure brain diseases . It has been noted recently that one out of every six people is affected by brain disorders. The diseases of the brain touch us all which can include Parkinson’s, Alzheimer’s, Addiction and Strokes.
What would a cure mean for me? It would mean the world! I know one man in my neck of the woods who has done a tremendous amount of research on the brain. His is Paul Allen. I would highly recommend you checking out his site: http://www.alleninstitute.org/ .
I know many of us do not have the money to send off for research, but have you ever thought about donating your time or even yourself to be researched? I wanted to highlight this because if you are one of those affected by any of these medical problems, I would encourage you to participate in any research study you can. Our family has made it a practice to be involved with the research community in hope for a cure. We have done this as a family and it has been extremely gratifying. Our son Luke has been in at least 10 studies. I almost think I could call him a professional at it.
The mystery of the brain is amazing, but as I studied the brain’s general functions when I developed a large brain tumor-it made me aware of why I was having the problems I had encountered over a period of years before my tumor was diagnosed. My tumor was so large that it shifted the contents of my brain to one side. It sat on top of the motor cortex specifically the movement area of my brain that squeezed the vision, behavior, hearing and coordination centers. Here is a fascinating photo I give credit to TIME magazine that gives you a layman’s look at what part of the brain does what: