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
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