Hope & A Book Called Experience

I recently wrote that “the process of teaching any new skill to an individual with autism requires patience and consistency. Don’t rush the process.” Obviously, this came after the fact — after numerous attempts and numerous strike outs. One in particular was potty-training. Callie wasn’t potty-trained until he was literally turning 6 years old. That process alone caused me to age. Anxiety crept up on me, and depression asked me to dance the tango or was it the waltz? Either way, it had me thinking that I was going down a path that lead where my heart so desire, but instead, it squeezed me tightly, never letting me go, no matter how hard I tried. The air I breathed had been vacuumed and a mask was placed over my face. . .thoughts trapped. . .feelings consumed. . .lonely. . .so much pain. All of this on top of my son’s lack of communication and social skills. Hope quietly slipped in & out. . .and then finally disappeared. My oldest son didn’t take as long to be potty-trained because he understood the training. Callie, on the other hand, couldn’t comprehend the concept of going to the potty to release. In a lot of ways, he was no different than my one year old at the time, who I had to lay down and change. The problem was, he wasn’t one and he certainly didn’t weigh 22 or 23 lbs. I became uncertain as if Callie would ever grasp hold of the idea of peeing in something other than the swimming pool he wore daily. I tried everything. Getting rid of pampers and soon getting rid of pull-ups. Buying “big boy” underwear. Being upbeat. Dealing with accidents calmly. Placing the potty in the game room – a place comfortable and less intimidating.  Wearing less layers of clothes so it would be easier putting him on the potty. Putting up a schedule to help him adjust and hopefully. .  .prayerfully, independence would kick in. Routines settled in for trips to the bathroom: first thing in the mornings, after meal times and before bed. Lots of liquids wouldn’t hurt either. To all of this and the uncounted hours of undertaking, no avail. Unresponsive to any approach. In fact, Callie didn’t mind sitting on the potty. He had his books, video games, TV and me as his entertainment. He would sit with no complaints. It was pretty much the same thing he did anyway but in another location. The passing time did not phase him either. He was quite satisfied with his own world adventure being transported from room to room. Knowing change was being implemented seemingly gave him patience. I felt lost and conquered. No success stories, not even small ones had occurred and I had become used to this way of life. But then the norm began to change. Several accidents and trips to the potty became annoying. He was no longer ok with his day being interrupted to go to the toilet or even to sit on the potty in his favorite rooms. Tickling him, playing games, reading books and singing songs upset him to no end. Trying to make his potty-training enjoyable only made his world feel invaded. He cried. He screamed. He ran. This became a regular thing. When his sensory impulses lead him to touch and smear poop on the walls, I quickly became aware that my techniques were not working anymore and maybe he just wasn’t ready. I put the potty-training to rest for awhile and in the meantime, I continued to wash, bleach, sterilize and spray freshener all day. I felt like I was having an outer body experience. I was cleaning poop off of walls, stairs, sofas and anything he sat on and touched. On my hands and knees scrubbing and disinfecting urine stains out of the carpet, both of our clothes and again anything he sat on and touched. This was daily. I saw myself drifting  further and further away from anything that resembled hope and being complacent with the status quo. I woke up to the unpleasant aroma of both #1 & #2 and it lingered until nightfall, and then the next day repeated itself as it did before. No matter how hard I washed my hands, showered and cleaned my house, I was surrounded with the smell of my failures and the foul odor of disappointment of what I could not seem to help or improve. I looked up potty-training for children with autism and found key words like patience, consistency, visual aids, applaud & celebrate. But I wasn’t really trying anymore. Every now and then we would go through the motions but no real effort. The philosophy of being a good parent was something I wanted to master. I was sitting in a class  trying to figure out how to jump over the moon and back for your child but always wondering if that was enough. How could it be if I was failing? And not just failing with potty-training. I wasn’t understanding my son. He was communicating. He was hitting the balls but I never caught one. I missed it every time. But one day – a breakthrough. I was cleaning Callie up in the bathroom. There was poop everywhere — on Callie. . .on the toilet. . .on the walls. . .on the floor. . .on me. I sobbed uncontrollably as I began to wipe Callie’s legs and feet. In that moment, I cried out to God and said, “Ok God. I get it. This is how it will always be. You know I’ll take care of my son but I know he’s never going to get better –” Before I could say my next word, I heard my oldest crying. He had gotten hurt upstairs, so I called for him to come down. He had hurt his finger and it was bleeding. Callie says “What’s wrong Marquise? It’s ok.” I fell over on the floor. Callie hadn’t ever said a complete sentence. He barely said his brother’s name. Even though, I knew he had associated this incident with one of his Calliou videos where Calliou’s sister gets injured, I didn’t care. He used it appropriately and replaced Calliou’s sister’s name with his brother’s. Up until this point, it was one word sentences. Cup. Yes. No. Juice. All we had seen mostly was sign language and pointing. I sat back. . .yes, in poop and all, and said to God “Ok. I’m not giving up.” Life didn’t miraculously turn better. It took Callie a long time to be potty-trained. But I learned that anything with trial and error, consistency is vital. I realized that potty-training is like learning to ride a bike. Many kids don’t learn to ride in a day. For some kids, it takes awhile, and for children with autism, “awhile” is literally a course. Callie took months getting on the bike. It took him even longer to put his feet on the pedals. Understanding that you have to move your feet and steer the bike to go forward is a complicated part for the brain to process. For my son, it didn’t always click what the next steps were. For us, it’s natural. We don’t second guess, but for Callie and many children on the spectrum, it’s a method that has to be tried, repeated and learned until it becomes a routine. I can’t forget my talk with God nor can I forget how hope showed up unannounced. That memory has picked me up & kept me sane plenty of times. I had lost something. . .well, actually I had let it go. My son’s delays were ever before me, and my eyes, as well as, my mind were closed to anything good. Every time my son’s name was mentioned, all I heard was first name – Autism and last name – Spectrum. All my senses were clouded. But God knew I had an unlimited supply of love for Callie. It was hope that I ran out of and the notion of a brighter future had been dismissed. So He took hope and my love and intertwined the two. . .and 10 years later, here we are. Not perfect. Just progressing with triumphs & lost ways. Rises & falls – these pages and new ones as they come,  are placed gently in a book called experience – something I never fail to be without.

 
 
Thanks for listening,
 
Portia
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