I have never been good at this sort of thing. the basic ebb and flow of life. But ever since that day when i realized I had gradually lost my son to the darkness of autism my ability to adapt has declined. Every loss of a skill, however small, sends me into a state of panic. The past few months have had me in a constant state of panic as he began having urinary accidents that he did not have before. I would clean his clothes crying asking inside how far the regression would go this time. Is this going to be permanent or would there be some miracle that would take this plight away from us?
I began to obsess in my my mind. What changed? Was he upset about something? What did I do the first time to get him potty trained? and of course the never ending quesiton of What did I do wrong? What am I doing wrong? What am I missing? Is he sick?
One morning about a month ago the anxiety was so bad and the accidents just kept coming. Load after load of laundry. Clothing, bedding, two thrown out couches, a fight with our therapists about the issue and I didn’t know what else to do. Desperate for answers and physically shaking in fear and anxiety I called my friend and said, “that’s it, I’m taking him to ER can you ride with me? I don’t want to go to Detroit alone”. “Ill be right there” she said. As I waited for her to arrive at my home after taking her kids to school I packed up the “Autism to go” bag. I packed his portable dvd player. All his favorite dvds. all his paperwork, his headphones, doritos (in the blue bag) an Ipad, my Iphone and a charger for back up. I wanted answers. I needed answers. I was empty and out of interventions. Nothing in his immediate environment had changed, his schedule had not changed, his therapy had not changed and I was standing there empty with two less couches, therapists breathing down my neck and and another empty bottle of laundry detergent.
The doctors found nothing. Thankfully. But after a day in er with blood work, kidney ultrasounds and countless tests the young doctor gave us the good news with a smile on his face that “nothing is physically wrong here. My work here is done” I looked at him silent for a moment knowing I should be happy about that but my mind only raced more. “Well, this is where my work begins then” was the only way I knew to respond. Noting the look in his eye I could tell the look of concern in his face for me breaking that doctor code of coldness as he said, “Good luck to you” and pivoted out of the room and to the nursing desk to collect another chart.
Since going home that day I have tried everything. I took away technology. I kept the house quieter. I cut down on therapy (not wholly by choice but that’s been covered). But the laundry just kept coming and every effort I had taken was in vain. I took him to the bathroom every 20 minutes for over three weeks. but he just kept backsliding and began to have accidents at school too. Three calls from the school to come and bring him more clothes and I had to break down and begin purchasing Pull ups once again fearing that he would get even more lazy but I had no choice. And what has made this whole escapade even more anxiety provoking is that in every other part of his therapy and life skills he has been progressing forward so I found myself trying to decide what was more important and that’s tough when everything is so important to his development.
As I began to cycle from anxious to angry and every emotion in between I began to take a step back. My emotions were all over the board. Some days I would give up and let him into the media room to play with the ps4 and just clean him as I found him wet and others I would be 1:1 with him for 24 hours straight. Yeah, I know the inconsistency would drive any BCBA nuts but then, I am not his therapist, I am his mom and the emotions behind this was breaking me. Somedays I could separate to get the therapy done and other days I would stand there just starting blankly out the window as my coffee got cold still sitting in the Keurig.
I was confused as he would play with me in ways that he hadn’t before. He was finally seeking me out. My mom said that he had begun asking for me when she babysat. He began asking out of the blue “I gana go play hockey… WES?!’ he was talking more and clearer and even learned the National anthem but despite all of this progression he was wetting himself over and over through the day and night. Afraid to change anything but afraid to keep things the same I stood stagnated. And that stagnation made me feel guilty, like I should be doing more but what was that more? I was in agony. Until, I decided there was nothing I could do beyond what I had already done. So, I left him to himself to figure this out on his own in hopes that time would fix the issue.
Three days, Four days, Five days passed and a new pack of pull ups later I sat there contented at the thought of leaving the fight for time to decide. Then, yesterday, no accidents. Then, last night as I got into my car for hockey i reminded my husband to put the pull up on Aiden before bed and closed the door for a small break with some friends and some hockey which has always been my hour escape for the week. Not thinking much of it i got home showered and went to bed. I awoke this morning to him stirring bright and early at six am and rolled over uttering “did you put a pull up on Aiden last night?” “oh, I forgot” David said. Frustrated I said “ugh, here we go another load of bedding and a wet kid”. I rolled out of bed and touched Aiden’s pants and wouldn’t you know… they were dry. I ran over to his bed… Dry… what?!
Its now three thirty pm and he has been accident free for more than 30 hours. I’m still holding my breath. I told my mom “this is the craziest action movie I have ever been privy to” as I sit cautiously optimistic. Has time really cured the issue? Maybe my fellow autism mommas were right that when a child with autism is about to progress they actually regress first. I’m still holding my breath that this saga is over but I am starting to see a light at the end of the tunnel. and not only are we exiting this nightmare of a regression with some new skills but I am walking away from this experience with a new perspective that sometimes not everything has to be a fight. Sometimes, I need to step back and let the process run its course. I need to let him figure things out on his own. Just like everyone else sometimes he needs to take a few steps back to grow five steps forward.