A common quip that is often quoted among the autism community is, “If you’ve met one individual with autism, you’ve met one individual with autism,” meaning every individual is different; no single description applies accurately the entire group. This is absolutely accurate, but I am beginning to see that even within a single individual, autism will be expressed differently throughout life.
I feel like I have an entirely different son than I had at this time last year. My son used to be mischievous and silly. He frequently wreaked havoc on the house, was a constant flight risk, and changed moods on a dime. He was volatile and sensitive, but frequently joyful and loving too.
The new Luke is the polar opposite. Since March, he has withdrawn more and more. Initially, he started limiting interaction by holing up in the front room so that he could monitor the entry door and know if or when someone who did not belong to the house showed up. After an innocent visitor scared him by knocking on the door without warning, Luke retreated to the relative safety of my bedroom where he could hear the door open without seeing the visitors.
From there, Luke’s anxieties escalated to include family members surprising him by walking in unexpectedly. He quit venturing out of the bedroom at all without calling, “Mom to come!” or, “Dad to come!” to hold his hand as he went through the doorway to the bathroom. That fear of what might be on the other side of the door soon evolved into refusing to enter the main area of the house at all. When it was time to leave, he jumped out the window and ran to the car rather than venturing into the great unknown kitchen area.
Last month, we brought home a couple of twin beds from my in-laws, hoping to give T, Luke’s 12 year-old brother who has been sleeping on the couch, a real bed to sleep on. Luke, however, caught wind of these beds going into the basement. After hubby got one all set up in the basement living room, Luke immediately took it over and demanded, “Set it up there!” for the second bed. And thus, Luke has effectively moved out of my room and into his own space in the basement, even further away from any potential surprises. This move has been a mixed blessing. I certainly enjoy having more space in my bedroom, and not having all of his in-home therapists hanging out in my bedroom because Luke refused to leave it is also a huge bonus to my own privacy! We set up a table for Luke in the basement so he can color and play with his Legos in the relative safety and privacy of the basement.
This basement arrangement is probably the most convenient arrangement we have had in many years. Luke is quieter and seems most content if we just forget about him. He does not like to be interrupted, and we must announce ourselves before going downstairs into his space, even if it is to bring him his dinner. He absolutely refuses to come upstairs to the kitchen. However, he has figured out a new route to get to the places that have what he needs. If he needs a drink from the garage where we store the Propel and flavored water that he likes, he simply goes up the back stairs, through the back door, out the back gate, around the back of the house past the cars parked to the side of the house and into the garage. If he needs to get into the main area if the house, he takes a folding chair with him from the basement, up the back stairs, out the back door, around the other side of the house, through the gate, and plops that chair down under the bedroom window, pries open the window and jumps through it, thus evading all main paths family traffic, and of course, leaving every gate and door open along the way.
The new exit strategy has led to several adventures in dog hunting too, as Gizmo frequently escapes along with Luke. It has become an inconvenient ritual of leaving the house every morning – making sure Luke has made it into a car in the garage, finding the dog, closing the gates and doors then leaving through the traditional garage doorway ourselves. This is all just a major inconvenience for us, but a sad symptom of the massive amount of anxiety that has taken hold of my sweet boy.
As that anxiety grips him, Luke is withdrawing more and more from new experiences. Before Christmas, we took him to ride a horse-drawn sleigh at a place he had been before with Champ’s Heart. He had a blast! It was familiar enough that he opened his eyes, interacted with both Santa Claus and the Grinch, who were both conveniently on hand. He was that same mischievous boy I have always known. This week, we took him on a sleigh ride to the elk refuge, thinking he would love it. To his credit, he went along with the idea and got himself out to the car independently. However, we quickly realized that the unknowns of the trip were too much. We had wanted to transfer to my Dad’s pick-up. No way. He would not leave the familiar car. The plan was to take a bus from Jackson to the refuge, but he again refused to leave the car. The operators of the refuge generously worked with us and allowed us to follow the bus in our car. As soon as we arrived, however, sweet Luke closed his eyes and buried his head under the hood of his coat. We guided him like that to the sleigh where he sat between hubby and I – head down, eyes tightly shut. We offered him a blanket to keep him warm. It went immediately over his head. I offered to take pictures of what we were looking at and show him so he would know what to expect if he opened his eyes. No! He sat hunched over, hiding his eyes the entire hour-long trip and refuses to open them even as he dismounted the sleigh and walked to the car.
I guess I should not have been surprised. Luke has been closing his eyes and ducking to hide more and more frequently this month. He did this at his sister’s baptism earlier in December and at church the next day even though his brother, D, was the speaker that day. Church has become unfamiliar to him since Covid canceled our ability to attend every Sunday. Now, he won’t even enter past the coat closet, so we sit in the closet and listen, eyes closed and head buried.
Christmas was no exception. He was scared that Santa might come. I assured him Santa wasn’t coming, but that he had left some presents for him outside and Mom brought them in the house. Santa won’t come in the house. But that did not appease him. Even the draw of Christmas presents was not enough to lure him from the basement. So, we took turns opening gifts, and running a gift or two down for Luke when it was his turn. He was a bit scared even of the presents as that also involves an element of surprise, but handled it so well. It became too much for him quickly, however, so we did not give him all of his gifts on Christmas. Rather, he opened one each day for several days afterward.
I really don’t know what to make of this new boy I have. Life at home has been significantly easier. Hubby and I even took a little 4-day vacation to Vegas between Christmas and New Year, leaving him with his adult siblings to care for him. I wish I knew if life was easier for Luke though. I am so sad that he no longer wants to participate in the few family activities we did have. Today, he would not even come upstairs for home church when we always sing songs he loves with him before preparing the sacrament. He utterly refused to leave the comfort of his basement hideaway and insisted we, “Bring bread. Order bread!” to him during the sacrament.
It is hard for me to think that he could really be happy as he harbors so much anxiety. I want so much to include him in family traditions and events, but pushing him too much inevitably ends in days of discontent and increased anxieties. More than anything, I want Luke to be happy. Right now, he seems content enough with his Lego Mario he scored for Christmas. In fact, he has interacted with that toy more than any toy except his Teddy bear that goes with him everywhere. Someday, I would like to see parts of the old, mischievous Luke back, but I am learning a new way to connect with the new Luke and have enjoyed several hours of just quiet Lego-building time. I miss the old, but love the new and hope we can strike a happy balance between the two someday!