Finding Joy: Autism and COVID

Luke gazing at me from his apartment window

As many of you know my son Luke is autistic.  When he was a kid,  he brought much joy as well as significant heartache in the midst of his diagnosis.  I desired Luke to have everything any other child would want, but I knew it would look different.  Luke did not know this and throughout his life he has shared an important intrinsic ideal that I always have looked to aspire to—-lots of joy!

Luke and I have experienced many extremes in our steps we have taken through his journey on earth. Everything that mattered to me has always been wrapped up in my sense of family and raising children in an atmosphere of love and acceptance.  It was not a surprise that the first time I spoke about COVID19 to Luke, he understood in the simplest of terms.  He knew life would have to change as we managed a new normal.  Luke likes to call COVID ‘the virus’ as he understands that term very well from having had bad colds in the past.

For safety, cautious steps were taken in Luke’s apartment with his care providers.   New rules were being put in place including social distancing and keeping me out of Luke’s apartment for the unforeseen future.  This sounds awful, but for all concerned it was paramount to abide by this rule.  His apartment is so small and sitting outside of his first floor bedroom window was not a dreadful place to be.  I know not everyone has this luxury to sit in a lawn chair by their loved one’s window so I count my blessings.

Luke on video chat is fun although he may not say one word! 

As Luke is just about to turn 27, I began to realize almost half of my life’s memories  include his beautiful presence .  It is through those lens I am reminded of some of the fun habits in Luke’s life that may help others in coping with the stay at home orders that we still find ourselves in.  After all our wellbeing is so important.  Here is Luke’s list:

A.  Luke loves music.  We listen everyday to all genres.  Recently, we watched a Disney sing a long where Luke and I sang along proudly with Pocahontas on The Colors of the Wind.  This definitely puts a beat in our step and heart as I know it will do for you.

B.  Luke loves walking . He exercises in place very well.  He may be stuck in his home, but his feet are always moving.  Luke and I also walk trails around his neighborhood when we can.   Anyone that knows Luke knows you have to catch up with him!  I am reminded of the Bob Dylan song about keeping up —  The Times Are A-Changin’–

“Come mothers and fathers throughout the land and don’t criticize what you can’t understand. Your sons and your daughters are beyond your command.  Your old road is rapidly agin’.  Please get out of the new one if you can’t lend your hand.  For the times they are a-changin’ .”

Luke and Dan on a recent visit to my backyard

C.  Luke loves to smile.  His face reminds me to do just that especially to our friends and family.  Make your time count with a smile.

D.  Take your vitamins.  Luke loves to remind his care provider’s to not forget his meds. He takes an excellent multivitamin and vitamin D.

E.   Luke loves to focus on routine.  If anything keeping a schedule is probably one of the most vital steps all of us should be making especially through this pandemic.

As these steps are thought about by you, know that Luke of all people is socially vulnerable.  Socially distancing is not new to him.  You are learning perhaps for the first time how it feels to be alone.  Remember Luke is almost 27.  He has been living a socially distanced existence way before anyone heard this term.  Not for a pandemic, but for him to adjust at times to life’s rapid pace when he needed to be removed from too much stimuli.

Last but not least, Luke and I video chat a lot.  It is important for us normal folks to gather and feed off each other positively as it is for those who are intellectually disabled.  I would encourage all of you to look for an outlet on a fun platform such as zoom.  Many of the kids ( including my 23 year old son) are playing on gaming platforms and doing their thing.  Lastly, Let us all not forget to do our thing with confidence.

Alesia 2020

 

An Open Love Letter to Berlin

Paul Klee’s The Lover is obviously in the abstract and darn if all I saw was The Pink Panther.

“Berlin, remember my time with you back in the summer of 87′, then again the fall of 89′, and yet one more time on my latest visit of 2019?”

Arriving autumn 2019 late in the morning after traveling almost 24 hours, the Tegel International Airport looked frumpish and out-dated. So naturally Tegel gave me no clues to the transformation I was about to realize in Berlin. Determined not to miss anything, my eyes foraged around as I studied the environment.  No doubt, I was anxious how to fit in.

Luke And Alesia

My friend from Kitsap texted me last night inquiring about my New Year festivity’s. I texted her back a photo exactly what I was doing at 8pm. I was standing in line at McDonald’s! Such excitement with my autistic son Luke, but when I look into his eyes I know exactly this moment here is where I belong.

Collision Course

Convinced it’s finished, we find excuses. Lots of them. It is never done.  Conflict comes and goes.  We can be on a crash course that promises to be the collision of a lifetime.  No one said life is fair.

Top Fun Spots of St. Augustine, Florida

St. Augustine, Florida is a well preserved city.   Along the Matanza River which is the main entrance into St. Aug., my friend and I saw extensive marsh areas where habitat can live.  As one who enjoys nature, I found this body of water a must see.  What makes it so interestingly dark is that its name actually means killings!  Since St Aug. is the oldest surviving european city, many battles took place where many people were slaughtered.  Chaos was nothing new to this area in its over 450 year history.

Ask What They Can Do. Not What They Can Not

This is Luke after walking 3 miles on a trail on the beach with his care provider. Yes. Luke you can do it!!! You walked the whole way!

“Luke, are you there?”
Sitting down next to my son, I gathered the rocks he was moving from one pile to another. Luke has always loved putting things in order. If it was not the rocks in one place all together, he was busily in the home putting all the chairs around the dining room table in perfect order. Pushing as hard as he could at times, he was bound and determined those chairs had to be just right.
“Luke, are you there?”
Moving to the computer room, Luke noticed the closet doors were not shut completely. From the corner of my eye, I watched Luke push the door shut until it was closed to his satisfaction. He pushed his body on the door and felt it to make sure it was exactly how his mind thought it needed to be. He was happy then.
“Luke, are you there?”
Luke looked up this time and he started coming rather rapidly toward my direction. He pressed his face and especially his nose into my hair. He took a deep sniff and inhales my aromas. These sniffs were not one or two times, but rather several until I said, “Luke, I know you are there and you can stop smelling my hair now.” He did.
“Thank you Luke.”
Luke does not seem to remember, but I remind him every time when he pushes too hard on my face or head that he is hurting mama. It takes a lot of reminders. I mean A LOT!!
In bringing these examples of some of Luke’s unusual autistic behaviors, I fail to describe too much of the damage that some of these strange motor movements can do to inanimate objects until he starting hurting me. It is because I want to make it clear that I want to see Luke showing me something HE CAN DO. It may not look pretty. In fact, a chair or table may get scratched up, and a closet door may get broken over and over as Luke believes he can fix it. That does not matter to me. As his mom, I am interested in seeing Luke just do. It is not being afraid to let go and bring a CAN DO spirit in my son. Autism does a lot to our children afflicted with this devastating neurological calamity, but we CAN DO a lot to show how proud we are of them even in the midst of quite possibly not understanding for ourselves what the behavior really means for the autistic mind.
“Thank you Luke for fixing my door and putting the chairs so nicely under the table. Mama is so proud of you. I love what you can do Luke. You are my best guy ever! You gorgeous boy.”

“Mama, Luke is your best guy ever and gorgeous.”

Yes. You are Luke and you can do….

Captured By Your Presence

Dedicated To My Sons:

In a yearning desire to bring my happy and sentimental past to life again, my family traveled with me to my childhood world of Hawaii for my 50th birthday. Such nostalgia is easily brought back to my inner being as my sons experienced my old life. They too were “plunged” into instant gratification of a world they may have never known if not for my insistence to vacation there.

It is with wonder bringing dreams come true for me to be with my kids in Hawaii. Living in Hawaii for four years as a young person with my own parents was the epitome of pure joy. How can you describe something to someone else unless they experienced it themselves?

Immersing my life’s past to my children’s’ present time in Hawaii makes for a true experience now merged forever.

Showing a whole new world to them is like painting on canvas. The artist’s strokes begin with a lone girl enjoying the sand on the beach. As the artist’s rendition begins to evolve, two other figures are captured in the drawing. They are my own boys on each side of me laughing with love that comes through with each stroke of the artist’s handiwork.

This life can only get better as merging a past with its present brings on amazing memories into the future.

Genealogy on Tour: A Unique Perspective

As a military brat in the ARMY,  I never lived near my extended family for very long. It came with the territory when I was born. Dad was a Command Sargent Major and where ever the government said for him to go we went. When he retired though it was indeed a sad affair for myself.  I remember leaving Hawaii and looking out the back window of our VW waving goodbye to my best friends Ricky and Sandy.  They waved back looking just as sad as my sister and I.  Perhaps it was in this lifestyle of moving alot, I learned a different perspective of life.

Introspection was indeed another matter.  I had never been one to reexamine myself inwardly as much.  I seemed to define myself through my parents as a child growing up which I believe is natural.  However,  when I thought about how my parents defined themselves things became abit more dicey.  For example, my mother is German/Swiss, but she had no idea past her grandmother of her family heritage.  My Dad’s family roots were abit more defined but with many loopholes in his Irish/English heritage.  My husband’s dad and mom both seemed like they knew very little details also.  So in steps me with all the new fangled technology,  www.ancestry.com , library card, and cemeteries and SHAZAM a genealogist novice I have become!

Does all this matter? I think so and I will say it has been tons of fun.  I feel like I have a better take on history. I also believe in some way (mind you maybe this part is a fantasy) that the WORLD could be a better place if we understood each other better and realize we all were at one point intersecting from the same plane.  For example, this story is about the evolution of a woman and really a picture of why womens’ rights were so important: https://alesiablogs.wordpress.com/2012/09/14/pioneer-woman/

Here also are photos I came across from my research that have much meaning to me as they made the past come to life for me.  I usually like to tell you what kind of camera was used with my photography but I did not take these.  I can only say they were very old ones! Enjoy:

A photo found from a google search I did. A lady had put an annoucement on a research site that she had a photo of my husband’s grandpa (right) and her grandpa. It was an amazing find as no one had ever seen this photo before.  circa 1920.

Cousins from my father’s side. circa 1930’s.

Late 1800’s Photo. My 90 year old step dad’s grandpa

My maternal grandma second on the right. circa 1920’s.

My husband’s great uncle. circa 1900~

My husband’s Maternal side. Photo taken circa ~ 1910.