Poop
I am a poop expert. Some guys study the Civil War… some guys obsess about baseball statistics. I live and die with my son’s bowel movements. Some of you are wrinkling your nose and shaking your head right now. But I know many of my ASD peeps are nodding.
GI issues are common in our kids. Eric never had a normal poop (hehe… he said “poop” again) until he was four years old. Actually, I know the exact month: October, 2008. Do you know when your kid’s first normal poop was? I didn’t think so.
I know this date because it followed a few weeks after the worst day of my life: September 25th, 2008. Eric’s doctor suggested we take him for a colonosopy, endoscopy and pill-cam procedure to evaluate his GI system, which was a mess. The ordeal actually started on September 23rd. Eric had to fast for two days prior to the procedure. He was not allowed to eat or drink anything with color. He survived on white lollipops, lemonade and lemon italian ices. What a hoot that was, let me tell you.
The day before the procedure consisted of fending him off from the kitchen cabinets like a hungry jackal, full on melt downs and temper tantrums, and the ever-pleasant suppository!
The hits kept coming on the morning of the procedure when we had to force him to swallow this god-awful gunk that basically served as liquid drain-o, an enema, and a delirious 6:00 A.M. drive to Staten Island for the procedure. That’s when the bad part happened.
I don’t remember if I lost a coin toss or I just had a macho moment and volunteered, but I was tasked with carrying him into the operating room. He was never a fan of doctors’ offices and he immediately knew something was fishy. He clung to me so tight I may still have the scars. He screamed and cried like I never heard before. The doctor and nursing staff were amazing. They were kind and understanding. They told me to lay him down on the operating table and control his hands while they put the anesthesia mask over his tiny little face.
Eye contact has always been difficult for Eric, but that morning he looked deep in my eyes. The fear I saw literally makes me shutter as I type this. They put the mask over his face and within 20 seconds his crying began to stop… he took three deep breaths… then he slipped away.
Of course he was in no danger and everything was normal. But the entire experience buckled me. I managed to somewhat hold it together as I left the OR. I saw my wife in the waiting room and she knew I was in trouble. I told her I needed a minute and left the office. I walked to our car and let my emotional breakdown take its course. All of the pain… all of the guilt… all of the anger… all of the sadness poured from my body in one ugly instant.
I collected myself as best I could and reentered the office, exhausted. He came out of the procedure with no medical issues, but cranky and scared.
The doctor implanted a pill cam in his GI track that would take hundreds of pictures of his intestines as it made its way through. We had to check into a local hotel and monitor Eric while he wore this gizmo attached to him by a harness that served as a receiver for the images the pill cam was capturing. For 8 or 10 hours we had to entertain our little maniac and try to keep his mind off tearing the gizmo off his body. That night we had to return to the office, have the gizmo removed, and drive home.
A couple days later the doctor met with us and went over the results. He found that Eric had thousands of tiny ulcers and lesions in his intestines that were causing his constipation, diarrhea and discomfort. The medicine and diet he prescribed worked like magic and a few weeks later… TA DA!!!! NORMAL POOP!
Today, my wife and I kiss each other hello, ask how our day was, and inquire about Eric’s poop. “Was it normal?” “Yes, picture perfect…” I don’t know what Eric remembers about the ordeal. He has gotten better with doctor’s visits but to this day, when we walk in, he begs, “No lay down!” And that breaks my heart.
We have regular conversations about poop here too. It's just part of life with a child with autism, I suppose. Our daughter's digestive issues have improved dramatically on a GFCF diet. Now all we have to do is keep her diet balanced properly so that she does not get too constipated. Because of our success in making progress in this issue, someone in a doctor's office once tried to write down that she had none of the typical digestive issues anymore! I quickly corrected them that she still has them all, it's that it is very carefully managed. Without that, she'd be a mess all over again.
My heart saddens to hear that story as I can relate in similar ways. We haven't been through those kid of surgeries/check-ups yet, but there has been way to many times I have had to force my frightened beyond comprehension child through a medicle procedure or even simply a doctor's check-up or special evaluation (my youngest is deathly afraid of the stupid ear monitor machines he's been forced to deal with lately…). It's heart breaking and gut wrenching because we know there is no way to help our precious little ones understand we wouldn't allow them to be in danger and so to please trust us…
As a teacher of autistic children I know this one well. I have many times had to monitor poop and report back to parents. I currently have one student who has just had his first normalish poop at school. This was a moment of celebration after years of constant diarreah. Before he came to us he would have up to 20 very wet poops nearly every day. His mom has been working hard with doctors and naturopaths to get his digestion under control. It's not quite there yet, but it's coming.
Once again, Jerry, you have outdone yourself. YOu're a born writer. I think you should compile these and do an ebook and make your own book at mypublisher.com. Seriously. By the way did i mention I'm bawling? My god.
Well Done!! I cried, I related, I felt your pain, and yes, I have to admit… I smiled and laughed on the inside (at the end). Not at the horrible experience that Eric and your family had to endure but because of the realization that as a fellow ASD parent, we will talk candidly about ANYTHING!! I haven't really had to deal with this aspect of ASD so I guess in my family we are lucky. I know that for millions of ASD families their story is just like your. My heart goes out to everyone who deals with the horrible medical issues related to Autism.
I had a completely different blog planned for today on Laughter, Could be the Missing Piece (http://laughtercouldbethemissingpiece.blogspot.com/) but I am going to "steal" your title and run with it in a slightly different direction. I know stealing isn't a good thing so let's just say I will borrow it….. forever. I look forward to your next blog as I know it will be an amazing!
after reading the research studies this makes sense and sounds like the measles vaccine would possibly be the guilty party. Thanks for all the posts.