Changes and Challenges

Like others across the country and world, we are doing everything in our control to keep our family safe and healthy from contracting the COVID-19 virus.  We are struggling to have some sort of normalcy in our house, just like you.  My mind is all over the place, which actually isn’t necessarily out of the ordinary.  However, these days it’s times 10 and autism is loud and clear in our home.  Routine and schedules are of utmost importance to our son and many others with autism.  I would like to share a little bit of the last couple of weeks, as we navigate this chapter of our autism maze.

Shortly after the temporary closing of Ross’ day program, the concerns over the calendar began.  Ross loves the calendar and knows my appointments better than I do.  Multiple times throughout the day he goes through each page of my planner, questioning every day.  He quickly noticed that I had been marking off events and brought them to my attention multiple times as well.  As of today, he is particularly concerned that his day program meeting in May is still listed.  I reassure him that the meeting will take place, knowing that in the future I might have to change my answer.  He misses his personalized program calendar the staff make for him.  The 4 magnets are evenly spaced on the refrigerator waiting for the day he can hang another one.

Ross enjoys working on his IPad on and off throughout the day.  I hardly notice the bits of songs or snippets of movies he plays, as this has been going on for as long as I can remember.  It’s more like background noise.  I am definitely a music person and love having tunes on as much as possible.  In fact, I routinely start Pandora first thing in the morning.  No TV.  Our recent home bound status started with the introduction of a new song to Ross’ playlist.  Engelbert Humperdinck’s, “The Way It Used To Be”.

Ross’ routine is to play a portion of the song, he meticulously rewinds and plays only a few measures, over and over and over, never reaching the end.  I have to say, that this song has not been a good addition to the playlist in my head and has definitely been getting on my nerves, which generally doesn’t happen.  I do like Engelbert, but that song!  I hear just a few measures hundreds of times throughout the day.  Most definitely, when that is the last thing I hear before going to bed, I know I’m not going to sleep well.  Seriously, I just can’t take it, but I don’t have the heart to tell Ross to stop playing it.  He loves the tune so much and it shows all over his face.

One evening, as the few measures of ‘The Way It Used to Be’ started to play, I sank my head in my hands.  “I really wish he would go back to Nat King Cole, Andy Williams or Ray Charles. “

Quick witted Greg shouts, “Hey Ross, have you heard of Tom Jones?  He sings a song named ‘Delilah’.”  He continues, “My, my, my Delilah.” breaking into song.

“No!!” 

We both burst into laughter.  So far, I have yet to hear ‘My, My, My Delilah’ and I’m continuing to keep my fingers crossed.

Our grocery shopping has also become a bit more stressful for me.  With the concern of the virus, picture yourself walking into a grocery store with your autistic son, who has a coughing tick.  —Yes, that’s me.  Ross has had this tick for well over 10 years.  Heads turn, evil eye stares, huffs of disgust, shoppers quickly changing direction.  Our normal shopping trips have recently turned into an event of me navigating the isles as quickly as possible, trying not to draw additional attention to our presence.  Ross is oblivious as he continues to cough, push his glasses on his nose and messing with his face, which we have been trying to correct for months.

“No coughing, no.”  “Don’t push your glasses, no.”  “Don’t touch your face, no.” 

He knows the drill, but can he stop?  No. 

Enter the face masks.  While we wait for the soft fabric masks, we used the ones Greg found in the shed.  I can tell you, they were a struggle for both of us, and Ross was definitely not thrilled.  By the end of our shopping trip, his glasses were so smudged he could barely see out of them.  I can almost say the same about mine.  The shining moment came when he told me, “Wash your hands, get home.” as we begin to checkout.  At least that one is becoming a routine.  We both walked at a fast pace out of the store and were extremely happy to climb into the safety of our car.

As I share the struggles that we have experienced lately, I know they are small in the scheme of a lifetime.  Ross reminds me daily to find the joy in life, as he giggles, hugs, sways and rocks to the music, smiles and hops around the house.  This morning he is sitting peacefully listening to his Andy Williams station on Pandora.  Perhaps I should take a page from his book. He is safe, calm and happy.

While all of these are mere inconveniences for us, for Ross they are not.  We will never know if he truly understands why his day program is closed, why he has to wear a mask at the store and why he shouldn’t touch his face.  For this reason we will continue to help him through the coming days and months to become accustomed to our new way of life.

As I share the challenges we are facing today, I am thankful that we have come so far.  My heart goes out to those who struggle with so much more and hope that they find a little bit of peace and comfort in their day. 

To those of you that might remember my toilet paper story, well yes, that continues to be a concern.  And the hand soap!!  If you aren’t familiar with my blog post “Who’s going to rip off the band aide?” I would invite you to read it.  The struggle is real.