Isaac was "potty trained" today. He had no accidents. He went to the bathroom by himself and called me in to wipe him. No mess. Tomorrow he may do just as well or it may be as though he has forgotten everything that he remembered to do today. This is a simple, true fact that drives me crazy.
My attempt to potty train Isaac, who has Down syndrome, began when he was nearly five years old. I had been actively worrying over it since he was 9 months old when I attended a gathering at which parents of a teenager with Down syndrome had been asked to speak. The parents were speaking warmly of their child's experience in middle school, when the father announced that one thing that plagued them was that their son was not yet potty trained. I could actually feel the change in the atmosphere of the room as ten parents of infants with Down syndrome struggled not to reveal the shock and anxiety which they had experienced upon hearing this statement. The scene was burned into my mind and nothing about his diagnosis had rocked me more than the idea of this being his possible future. So by the time he was four, and I had finally obtained a copy of a good potty training program to use, I had spent many years with it hovering in the background of my thoughts.
Isaac will be eight next month. There have been times, months even, when I had thought we had achieved success. But then the setbacks come. The most recent one has lasted more than three months and reduced me to tears as I scream at the walls that I refuse to put him back into diapers. It has been a long, hard experience that seems as though it may never be quite finished. It has been an experience in my life that has made me revise my theory that you can accomplish anything you set your mind to. It has caused me despair unlike anything I have experienced before because, you see, if I do not succeed I fear that Isaac might eventually end up in a "home." My experience as a therapist has taught me that an inability to toilet oneself lands people in nursing homes faster than any other lone factor. And so, with each potty accident, I worried about what would happen to him if Mat and I died or lost our ability to care for him. If he wasn't potty trained, who would take on such a thing?
So potty training began. I followed the program doggedly day after day. When I couldn't make progress on my own, I consulted and hired an occupational therapist that specializes in potty training and came with a big price tag. The potty training program requires that the child clean up after themselves and complete multiple potty practices from the sight of the accident to the toilet after EVERY accident, sometimes as many as five or six a day. The whole after-accident process can take from 20minutes to an hour depending on how cooperative the child is. I learned hands-off corralling methods that I am expected to use while remaining calm and patient when he refuses the practices. The program also demands that I not tell Isaac to go to the bathroom as I watch him squirm in an effort to hold it as the clock advances to 1:00pm without him making so much as one trip to the potty. I marveled at the capacity of his bladder as I sweat his decision to initiate going to the bathroom on his own. The whole thing is very wearing.
Once I was sitting in the waiting room of the therapy clinic, relaxing with a magazine when I overheard a conversation between two other moms about potty training. My pulse started racing and I found myself having to take deep breathes to try to calm the anxiety I felt rising to a fever pitch within me. When the potty training OT discharged Isaac, she tried to convince me to take on a few clients for her. I responded (only half jokingly) that I would definitely need to see a psychologist about my Post-Traumatic Stress first.
I wrote something in a fictional story of mine that effects me different than I'm sure it would effect anyone else. It makes me cry every time I read because it embodies what I have felt through this struggle:
For the first time in his life, the miller felt beaten. He sat on a log bench, facing away from the fire, looking beyond the tents into the blackness.
William came up behind him and placed a hand on his shoulder. "We won't give up."
"No, of course we won't," Miller Stephenson agreed, but he couldn't put any conviction into the statement.
"Father," William said, crouching down beside him and looking earnestly into the older man's face. The miller glanced at him briefly and resumed staring at the darkness in front of him. "You have always told me that there is hope no matter how bad things get. Let me tell you now, and please know that I believe this...There is still hope."
For me the scene took place in my bedroom. Mat had just walked out of the room to complete the potty practices that I couldn't quite make myself finish. I had said something halfhearted about not ever giving up, but I didn't mean it. I was sitting on the edge of my bed, staring at the wall and letting the tears fall. Evan, who was eight at the time, came by and saw me crying. He didn't know that my belief in hard work and perseverance was crumbling around me. He had no wise words of advice. He simply came in and sat on my lap, hugged me, and let me cry on his shoulder as I lamented that I had never tried so hard at something in my life and failed so miserably. I must confess that at the time no thought of hope penetrated my gloom, but Evan's comfort offered me the strength I needed to carry on.
I have learned so much from this potty training experience, not the least of which is that writing truly helps me to cope with life. I'm writing this post trying to search through this whole experience for hope. Do I have hope?
The answer I am happy to say is "yes." But I see it in a different place than I expected to find it. I see it in the fact that I am completely sent for a loop whenever Isaac has an accident. After all these years, I am still shocked and upset that it has happened again. If I didn't continue to have hope that each accident will be the last, wouldn't I lower my expectation and, upon finding him messy again, think to myself that this was par for the course? But I don't. Usually I take a deep breath, shake my head in amazement, and deal with it. Sometimes, when I'm tired or it is particularly messy, I shamefully admit that I yell and rant. But, maybe, what counts is that I still hope and so keep trying and never give up.
