Most days are really great. We are past some of those more difficult phases that accompany early diagnosis. I remember the days of detective work in which I wondered if actions stemmed from the neurological deficit or behavioral patterns set into motion by said deficit. I remember speculating if some of his self-flagellations would be something we’d face at the end of every day for the rest of our lives. The holidays have always been especially tiresome. No one really believes that the extra wattage put off by our Christmas tree adds up in our sensory index. I know exactly how many Christmas movies, carols, light shows and other assorted holiday sensory exhibitions it will take to throw us into a meltdown. Don’t be jealous…it took me almost eight years to learn.
The real issue is that as excited as Noah is about the holiday season, it brings an element of change into our daily schedule. The anticipation of the change stuns us before we even begin to process the expectation of what the holiday brings. Today has been one of the days when I’ve noticed more than others just how difficult this is for us.
It began with the daily trip to the Advent Calendar. As Noah placed the numbered felt object on its corresponding spot on the calendar he announced how many days we had left. Soon his fingers began that rapid tapping. Methodically, his thumb meets each finger on that given hand. Beginning with index finger and proceeding to pinky finger and then back again, both hands simultaneously calculate unseen factors. Then we begin to plan for the day ahead, as well as for the remaining days of this week. (And help me Jesus if the schedule changes this time of year!)
Today our plans were to clean the house together, work in the yard and then make dinner. After today was sufficiently mapped out, Noah asked what we were doing tomorrow. I should have known it would throw him for a loop but sometimes even I forget how much I have to prepare him in advance. I said, “Tomorrow is our day to have Christmas with your cousins.” He spun on his heel and look at me incredulously. “It’s not either. We do that a Sunday. Tomorrow is Thursday. Tomorrow is also not Christmas day. I can’t give them their gifts tomorrow.”
You see, for Noah it is all about the action of him giving the gifts. He will wordlessly open his own presents, but his real joy will be in seeing his cousins open what he gives them. Because the action of giving rests on Noah, I have inadequately prepared him for this even by moving it up in the holiday calendar. After I explained why we were making this change, Noah quietly retreated to his fortress of solitude – his room. Unfortunately, I had plans for that room right about then.
Generally, Noah’s room looks like rats might vacation there. While it is all arranged by some system involving texture and size and patterns concealed to the human eye, to me it is an abomination with which I’ve learned to live. But today, the sheets on his bed needed to be changed. I typically do this on days when he is at school so he doesn’t know I’ve done it, but I thought we could handle it. I was wrong.
I asked for his help in stripping the bed, thinking it might give him a measure of control in the situation. Ignoring the sound of his hyperventilation, I removed his pillow from its case. I thought he was going to pass out. While he was able to allow me to take the dirty bundle, he began to stim as I carried them to the laundry room. All the while I explained to Noah, “We have to change your sheets Noah.” He screamed, “Not change!” – which really irritated me because we both know good and well that I ALWAYS get the very same sheets back on the bed before nightfall! So I ignored him. But Noah couldn’t ignore me, or what was happening.
As the washer consumed his sheets with soapy water Noah asked, “When will we be through changing them?” I sighed and said, “After they wash, they have to dry. It’s going to be a while.” He left the room but returned at the change of each cycle of the washer. During the spin cycle I thought I might have to call the paramedics. When the washer finished it’s work he announced, “We are through changing!” I said, “No. Dryer.” He cringed.
I busied myself with some studying to keep from loosing my mind with worry at his continued self-talk as he comforted himself that he was “almost done changing”. I was ripped from my intellectual haze by the dryer buzzer. I always keep the buzzer off but Noah felt like we should turn it on so we would know immediately when we “were done changing”. Unfortunately, it took several of those super-sonic, earsplitting buzzes to completely dry his sheets and quilt. By the third buzz he was doing the “Charlie Brown dance” (you know the one the kids do while Schroeder plays) in the kitchen and I was considering running away from home altogether. Please remember – all I’m trying to do is change the sheets!
It has been a few hours since I restored order to his room, but his nervous system is done for the day. He is stemming so loudly from his room that I’ve got the television set at a volume I could hear from the sidewalk. Today, I feel like a mean mommy because, today, I forced change. A few moments ago I wondered if God has these exact same moments.
I’m changing a lot of things in my life right now and I’m pretty confident God is directing each change as only he can. I’ve got a lot of friends who are experiencing this holiday through change. One is spending her first Christmas morning without her children due to a custody arrangement. Another is spending an anxious holiday unemployed. Still others are in the midst of divorces or grief or struggles or illnesses that are changing the people they once were. Like Noah, many of us are yelling “Are we through changing yet!” Some days it appears to me that change is the only constant. But I loathe it.
Still I feel I can hear God’s sigh as I perform my own dances in depression or wrong thinking – very unbecoming self-stimulatory behaviors I might add – as he says, “all we are doing is making a change…” To him, we are changing the sheets. To me, we are turning my ontological framework inside out. Like Noah, I want to set that panic buzzer and each time I see a sign of change I want to ring the alarm. Unlike me, God doesn’t want to run away altogether – though he might want to have my medication adjusted.
So what am I to do on these days? With Noah, I patiently love his idiosyncrasies. I made one of his favorite dinners and indulged him as much as I could. I know that tonight he will roll over on a pillowcase pungent with extra Downey Fabric Softener and say he likes the smell. I know that the change, no matter how staggering it has been to our day, was both necessary and worth it in the end.
With me, God smiles and does the same thing. As I lay my head down on my newly laundered pillowcase tonight he will whisper: “I am he who is able to do immeasurably more than all you ask or imagine…no eye has seen, what no ear has heard, and what no human mind has conceived — the things I have prepared for you because you love me…nothing is impossible with me.” Maybe I will dream and then know that the changes, no matter how staggering have been worth it in the end.
