Category Archives: More Autism

Whose Approval Do You Desire? 

A kiss from my autistic son

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!

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. 
  

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Gathering

img_4547The 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.

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For Luke

Luke watching his brother at Little Bit Therapeutic Riding Center!

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.

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Brain Trippin’

Luke during a research study of his brain. 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:
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Luke

My handsome son Luke when he took mom out for dinner!

My handsome son Luke when he took mom out for dinner!

I had to repost this blog with Luke in his vocational class as they tweeked it some so the other link was no longer available. I hope those of you who could not see it are able to with this link. WE have a wonderful public school district here trying very hard to work with our disabled citizens. As a parent of a typical developing young man as well as Luke I get the unique opportunity to see two worlds. I do not take either one for granted. We need the two to become more inclusive though as my heart knows if others see the world through the eyes of the special needs, I believe real progress could be made. OK folks enjoy your day and give lots of hugs to your loved ones as we have no guarantees in this life.

Heroes

Luke on the bus to school. Luke is cushioned with a head rest and back support because he has been known to injure himself without warning.

Luke on the bus to school. Luke is cushioned with a head rest and back support because he has been known to injure himself without warning.

Are there any heroes among us anymore that cause us to pause with amazement? Recently I shared the story of my step-dad Roy who is a hero for his military career as a WWII Prisoner of War. When I asked him what defines a hero? He would say something like this, “Our heroes are those we left. I am no hero. I guess I was just lucky. Those left on the battlefield are the amazing ones”. As we continued our conversation, we both agreed having heroes in your life is vital. What was discovered in the process is that a hero could be invisible.
To me the greatest heroes among us can be the ones we hardly notice. I have found that it is a good thing to find amazement in the smallest of things no matter the situation. For example, I have a son with Autism. Luke typically has more bad days than all around good ones. Yesterday Luke had one of his really good days. He was all smiles and so was I. It was a time of wonderstruck for me. He is my hero. He has taught me something about myself no one else can. He has taught me love and what it means to give it your all. Perhaps that is what we see in Roy as a POW VETERAN. He gave it his all and survived to tell his story for all those that had died. The respect we give to Roy is for a whole generation.
How do I say I can call my son Luke my hero? First, he is my son and I am proud of him no matter what the situation. Second, when we have a good day with Luke it tells me he is doing all he can to make it a good day for all of us. He is working his mind to will it for good thoughts when many times his mind is full of obsessiveness and torture. It is this Forgotten Power of Expectancy we all should be taking into our very being. I know deep down God is amazed at Luke. For unto to Him, He asked for us to come as children.. Luke is not visibly a hero like Roy, but in the quietness of our home my son is not forgotten. God sees us all the same. There is no difference to Him. Luke is working hard to be the best he can be. Thats hero enough for me.
PS: We have an ETSY store and you can click into it from the birdhouse photo. 10% will go to the Autism Society Charity if you purchase before February 14th! Also please follow up with your neurodevelopmental stories on http://www.facebook.com/alesiaandluke I am very interested in hearing about your story.