Confessions Of An Autism Mom

Flo and Ben

Some mornings with Ben are relatively stress free. This is not one of them. I knew when I heard him still babbling at 2 a.m that it would not be easy to get him up in the morning. With my gammy arm (resulting from a mastectomy and lymph node removal in 2012), it can be difficult for me to physically drag his large 10 year old body from the bed when he is tired, but I was up for the challenge. I open his bedroom door and I am greeted by the smell of poop. He had an accident during the night. Well, “accident” may not be the most accurate word. While Ben is fully toilet trained for number 1’s, his preferred method for number 2’s is to do it in his clothing and then dump it in the toilet. However, when I consider how far he has come with his toilet training, I realize how lucky I am that I don’t have more of a mess to contend with this morning.

Up until about two years ago, Ben engaged in a behavior not uncommon for autistic children: fecal smearing. From about the ages of 4 to 9, each time Ben pooped, he would smear it on himself, the furniture, his clothing, toys, the walls and the floors. Over the years I have thrown away thousands of dollars worth of “stuff” and spent countless hours cleaning feces. While many parents of children with autism deal with this issue on a daily basis, it is probably something that you have never heard of. That’s because there is an air of secrecy that goes with it. We don’t like to discuss this issue, even with the professionals who work with our children, because of a fierce determination to protect their dignity. It would kill me to think that anyone looked at Ben and his behavior as “disgusting”, although that would likely be the reaction of many. So we keep it hidden. Truth be told, I am only comfortable confessing it now because he no longer engages in that behavior.

As I pull Ben out of bed and start to undress him, I am reminded of a “poop-fest” that happened a few years ago, when I was undergoing chemotherapy.   It was about 1 a.m. Ben and I were alone in the house and I could hear him moving around in his room. Although I was feeling sick, exhausted, and drifting in and out of sleep, I felt compelled to go check on him.   When I opened his door and looked in, all I could see in the darkness was the whites of his eyes. My first thought was, “Where did he get the black marker?” Then the smell hit me and I realized that it wasn’t ink coloring his face.   It took me more than two hours to clean him, his bed, the walls and the floor. Ironically, while that is an unpleasant memory for me, conjuring up that image reminds me of the progress that he has made in toileting. The clean up this morning will be relatively easy. I feel grateful.

With his bath complete and the bed changed, I slowly get him to move downstairs.

“It is time for breakfast, Ben,” I say as I hand him a plate of turkey bacon and a glass of juice.

“No breakfast! No breakfast! BOOKS!” he yells back.

“Oh no,” I think. “It is going to be one of THOSE mornings.”

As I watch the clock tick away, I get more and more anxious, knowing that we have a small window of opportunity to catch the school bus. Luckily, he agrees to let me get him dressed without too much of a fuss. I put on one sock. He runs into the living room. I chase him and put on the second sock. He bounces to the kitchen, hands flapping. I follow in hot pursuit on my knees to finish dressing him. I feel guilt. I want Ben to learn self-help skills such as dressing himself, yet I don’t have the patience to deal with it in the morning. I put on his jacket and boots just as I see his student assistant arrive at the top of the driveway to accompany him to school. Today we will make it on time. I feel relief.

“Let’s go, Ben,” I say.

“ONE HUNDRED BOOKS! FIRST ONE HUNDRED BOOKS THEN SCHOOL!” he screams.

I feel impatient. “Jesus, Ben. We have to go now or we will miss the bus!”

“Bye, Jesus! Bye Jesus! Mommy is happy,” he shrieks. He senses that I am getting angry. He doesn’t like to see me upset.

I know it is pointless to argue with him, so I try another tactic, “Ok Ben, you can take 5 books to school today.”

“10 books,” he replies firmly.

I smile and nod my head in agreement. He has mastered the skill of negotiating. I feel proud.

Ben fills his backpack with books and we head out the door, just as the bus drives away. I feel frustrated. Although it will make me late for work, I have to drive him to school. On the way, I hear the familiar sound of Ben’s happy noises, “Queek, queek, queek,” he vocalizes with a big smile on his face. I smile in return.   I am glad that his mood has shifted and I wonder what happy thoughts accompany that bright, beautiful smile.

“He may be a little off today,” I tell the student assistant who greets us at the door of the school. “He didn’t sleep well last night.”

I breathe a sigh of relief as I board the car and head to my office. I love my work as an Educational Psychologist! Each day, I work with kids like Ben. Kids who don’t quite fit the mold; kids with autism, ADHD, learning disabilities, and behavioral disorders. I feel thankful that Ben has taught me so much about how to understand their issues. Being Ben’s mom also allows me to better support the teachers and parents of the kids that I work with. I know how they feel. When I discuss methods to deal with certain behaviors, I am not just “talking the talk”, I am walking that walk every day as a parent!

Mid-morning I am surprised by the sound of the fire alarm going off at the school where I am working.   More than 500 kids file out of the school into the freezing cold. Soon we are all ushered to a neighbouring school to wait in the gymnasium until the issue is resolved. The loud noise of a gym full of excited and scared kids is almost unbearable. I look across the room and see a boy about Ben’s age. While I don’t recognize him, I immediately recognize his behaviors. He has his hands clamped firmly over his ears, and he is gently rocking back and forth. There is a look of pained fear on his face. I feel compassion. I cross the room, give him a hug and gently rub his back. He smiles at me. I realize why God has blessed me with this challenge.

It is sometimes hard work being Ben’s mom. It is always a blessing.

 

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18 thoughts on “Confessions Of An Autism Mom

  1. That was touching. Thanks! And you have been blessed with the gift of patience. Although my Tim had similar situations, he is at a much different functioning level and much easier to deal with. Yes, master negotiators they are. They have a much steeper hill to climb to our expectations than we have to theirs; and they climb it, negotiating the entire journey. My hat is off to you Mom’s.

  2. I believe as I’m sure you’ve been told , that each child chooses their parent while waiting to enter the physical world. Ben chose very well ❤

  3. Thank you for this. I have a girl, about the same age as your boy, with sensory processing disorder and generalized anxiety. She is not on the spectrum, but she has some of the behaviours of an autistic child (we had her assessed in kindergarten). Some days can be difficult – where everything seems fine, and then all of a sudden, the world is turned upside down, and you don’t really know how it happened. Then all I can do is ride through the storm and try to be a good mom to all three of my kids, while trying to salvage the situation. I’m a single mom, so it can be lonely. We can feel like horrible parents, like we failed by letting things escalate, or by getting upset. Thank you for having the courage to talk about your experience.

  4. You are genius and God is with you and have given you this challenge for a reason, that’s obvious! Bless Ben, he’s a blessing!

  5. I believe my grandson is autistic, but my daughter is in denial. He recently had genetic testing , because of other medical conditions. I hope this will show something so he can get help. My daughter was in a car accident, she has problems with lifting etc. l read your posting and thank you.

    • Actually, there is no medical test which can detect autism. It is based on behavioral observations. Maybe your daughter is just not ready to acknowledge it yet. It is a difficult thing to accept. Good luck.

      • I hope she realizes it soon. Early intervention is so important. It’s great that you are being supportive! They’ll need that through the entire journey.

  6. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

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