As we were discharged from the hospital with our very sick little boy I couldn’t get the words, underestimating autism out of my head. They just kept popping up amidst the fog that had entered my brain since we took our son to the ER the day before. Seeing my child in pain, putting him through painful tests without any preparation and not knowing how much he understood was heartbreaking.
Ironically it was April 2nd, Autism Awareness Day when we took him to the ER due to vomiting, distended stomach and belly pain. An autism mom to the core, I made sure we were all dressed in blue in support of Autism Awareness.
Owen had been throwing up off and on for a couple of weeks. We thought he had the flu until he began vomiting up everything he ate. None of his food was being digested. His belly became distended and he was in a lot of visible pain. That’s when we took him to the ER. It was during that visit and our entire stay at the hospital that I was continually reminded of the realities of autism.
I would tell the doctors that he had autism and has difficulty with communication. Each one would ask if he’s okay being touched. I thought it was great that they knew enough to ask but I could tell by the way they handled him that the rest of it was a mystery to them. They would continually ask Owen how he was feeling and to point to where it hurts. He wouldn’t answer so I would ask the question more directly, “Owen, does your tummy hurt, yes or no?” Even when he would answer a question we were never sure if he was repeating the last thing we said or if he was answering correctly. The doctors wanted him to tell them what hurt and not have me “put the words in his head.” I tried to explain that he’s incapable of responding to them but I mostly got confused looks or the all too familiar, “this-helicopter-mom-needs-to-give-her-son-some-space” look. I saw their confusion and it reminded me of my son’s differences.
Owen has always had bowel issues. This is very common in persons with autism. He also has a selective eating disorder. Another autism related problem. He eats up to 12 foods. Those foods are label specific and cannot be altered or changed or he may refuse them. This is not the same as being a picky eater. He’s had months of food therapy which resulted in him becoming suspicious of the foods he was willing to eat. It can take months of seeing and touching a new food before he’s willing to taste it and even then he will most likely not incorporate it into his diet. There is no, “if he gets hungry enough he’ll eat” with a selective eating disorder.
This is a very difficult thing for others who aren’t living it to understand because it appears as though he’s just a picky eater. We told the doctor this and his reply was to just get a different flavor of medicine, “one that he likes” and “mix it in with his food, he won’t even know it’s there.” Um, wanna bet? Gerber changed its baby food packaging from glass to plastic and it took weeks to get him to eat the exact same food that was packaged differently.
So as I sat at the hospital overnight with my five year old son, hooked up to an IV to rehydrate his little body, I was overcome with a feeling of frustration. How could I possibly have underestimated his autism again?
I watched as nurses and doctors alike would come in and say hello to him. They would use their “talking-to-kids-voices” and ask him question after question that he showed no signs of hearing. I would speak up behind them, “He has autism and has a hard time communicating.” They would nod their heads in understanding, glance at Owen again out of curiosity (I think) and turn their attention to me. The thought would float through my head, “He’s not functioning as well as I thought he was, how could I have underestimated his autism?”
The nurses and doctors would ask me if he’s been in pain and for how long. I had a very difficult time answering them because Owen doesn’t feel pain like everyone else or he doesn’t show his pain like others do. I assumed that he hadn’t been in pain until he was writhing around in visible pain, but I can’t be sure. His belly is often distended and he’s always had bowel issues. I saw the uncertainty on her face as I tried to answer her straightforward question with anything but a straightforward answer. Why was it so hard to tell if he’s in pain? How could I have underestimated his autism?
When it came time for them to take x-rays, put in an IV, or do a physical exam it was all done in real time. There was no time for picture schedules, breathing exercises and videos on going to the doctor. My husband and I fumbled around, falling back into the familiar routine of picking at each other because we felt helpless to help our son. The x-ray technicians talked loudly in their high-pitched voices and I worried that it was hurting Owen’s ears.They set a teddy bear next to him on the table to comfort him. I worried that it would scare him because he doesn’t like toys with faces. Once again, how could I have underestimated his autism?
I felt a huge rush of relief when the surgeon came in to tell me that Owen didn’t have a total blockage and he wouldn’t need surgery. Then he gave me a look of pity and told me that Owen definitely has stomach and bowel issues that he’s going to struggle with for the rest of his life. He nodded as though offering me his condolences as he left the room. How on earth could I have underestimated his autism?
Twenty four hours after being discharged, his belly became really distended again and he was writhing around in pain. We rushed him to the doctor’s office where after examination we were told that his bladder was extremely full. We are still in the process of potty training him but he had been doing really well going pee by himself up to this point. I asked him, “Do you have to pee, yes or no?” He answered no just as he had several other times that morning but I took him to the bathroom anyway where he peed for 3 minutes straight. All this time he needed to pee but was unable to differentiate the usual discomfort in his stomach from the need to urinate. It was either that or he forgot how to use the potty on his own. Instead, holding it for more than 24 hours. Lord, please keep me from underestimating his autism.
During our stay, many of the nurses and doctors wore looks of pity on their faces. I’m not sure if the pity was from seeing a child so sick or because he has autism. Maybe it was a little of both. It’s been awhile since someone has shown pity on me for having a child with autism. In the beginning it was more common because I was still struggling with it. I’ve learned that people take their cues from me. If I’m unsure of myself, scared or embarrassed they react similarly. If I’m sure of myself and confident in my decisions they follow suit.
I certainly don’t feel like I’ve been given a tougher lot than others. We all have our crosses to bear and I wouldn’t trade places with anyone. I’m grateful for my life and my family. I wish that I could protect my children from hurting but that’s not reality for any of us. If it weren’t for all of the pain and heartache in my life I wouldn’t be the person I am today.
Pain motivates and shapes us. It changes us, makes us stronger and more grateful for what we have. I have faith that the struggles that my son faces will change him too. I pray that he doesn’t become bitter but accepts life’s challenges, becoming stronger because of them.