The Crapisode. Part "Doo."

Several months ago I wrote a piece for Huffington Post called "The Crappy Life of the Autism Mom" that described a crapisode, which is my word for what happens when two of my three girls with autism work in tandem to create a holy mess in the bathroom. A crapisode commences when one child uses the toilet, forgets to flush and leaves the lid up. Her little sister likes to play in water. Even toilet water. You can figure it out from there. Let's just say it ends with a healthy spraying of Lysol.

The point of the piece was to explain that for thousands of families like mine, autism brings challenges most people outside of the autism community cannot fathom. I also used a candy analogy in my "Crappy Life" piece. You know those Bertie Bott's Every Flavor (including yucky ones) beans from Harry Potter? I compared them to autism, stating that some kids got a "tastier" version of autism than others. Little did I know I'd spark a... ( er, um, can I say this on HuffPost?) ...a sh*tstorm in the autism world. The piece has traveled farther and wider than I ever get to go. Then again, I'm an autism Mom times three so I don't get out much. "Crappy Life" has been picked apart and scrutinized more than a specimen in a Great Plains Laboratory comprehensive stool analysis test.

With "Crappy Life" I did what writer's long to do -- I struck a nerve. I think I even coined a phrase. Many parents of kids with autism have thanked me for sharing how difficult life can be as you try to help a child with autism navigate day to day life. Others have berated me for embarrassing my children. Please. Embarrassment is my birthright. Ask anyone in my family about the little gifts my Grandma Yoli kicked under the counter after my diaper pooped out (literally) at The Farmer's Daughter gift barn in St. Johnsbury, Vermont in the mid-1960s. They still tease me about "losing my marbles in Vermont" forty years later. The day my kids can read my writing and complain to me that I hurt their feelings will be the proudest day of my life. I will apologize to them and hope they understand that I was fighting for them through my words.

Today I'll try an analogy that's nothing like candy. Autism is like cancer. (I can hear the bloggers clickety-clicking each other already.) If your father calls you to say he has cancer in the form of a tiny spot on his arm that the docs can remove with certainty, you are concerned, of course. But you do not run to church and get on your knees to pray for his survival. If your father calls you to say he just learned he has cancer in the form of a brain tumor that has spread to his liver and pancreas, you're in the pew before you hang up the phone. Both malignancies are called cancer. But cancer, like autism, comes in many forms. Some more life altering or manageable than others.

Through hard work, new biomedical testing, devoted teachers and therapists and a healthy dose of God's grace, my children are doing quite well for the moment. We're in an autism zone. Miss M., the oldest, is using a few more words than usual which tickles me pink. She sits with the seventh grade girls at lunch and my spies tell me she is well received. Good thing too. You think I won't "shake the foundation" of a twelve year old? Try me. Oh, and Mia just had a check up where the pediatrician was able to tell me how much she weighs and how tall she is. (Goodness those peds are helpful aren't they?)

Miss Jiggy G., my middle gal, is thriving in fifth grade. Her math skills amaze me. I got the shakes when I was asked to add more than two plus two as a kid. Her teacher called to tell me how pleased she was that Gianna was plotting graphs with the fifth graders. The only thing I ever plotted was how to skip off campus at boarding school. And her social skills are skyrocketing. She says, "Time to go to school to see friends!" Again, thanks to the hard work of fantastic teachers and a school full of decent kids who are taught to see Miss G. as just another kid. Not to mention one who won't tattle on them.

And Miss Peanut? Well, Bella, the little lady who created the crapisode, turned seven last week. She is the darling of her first grade classroom and is trying to make new sounds. Oh! And she has a new fine motor (or is it gross) skill. She's learned to lift the lid on the toilet all by herself. Craptastic!

Comments

[ParentofASDChild]

Thank you Kim! The truth of our lives is not always pretty! We can all love and accept who are kids are today and still have a sense of humor. - Katie Wright

[lifeorileyo]

Well done Kim!

You are a great writer and an even better mother.

Crap-tastic!

[mfb]

I agree that cancer is an important phenomenon to think about in the autism context, especially childhood cancer. We simply have to consider what's really going on in our environment that's making all these children sick.

[jlu626]

Can't imagine a day going by without analyzing my son's poop. (Quantity/quality, etc...) Nothing to be ashamed of... It just is what it is.

Thanks for making me smile...

[rng777]

Thanks Kim for being a fighter for your kids and ours.

Richard

[MidwestDad]

Here's another analogy:

An impacted bolus is to digestion as

Your writing is to the sum of human knowledge

[nhokkanen]

Have you never been mellow?
Have you never tried?
- Olivia Newton John

[Stagmom]

I know about the impacted bolus. If only I had know what gluten and casein did to my kids early on, I could have saved them much pain. Within 13 days of giving my eldest child whole milk and Cheerios (you know, that first birthday graduation to whole milk, so proud!) we had to administer her first suppository for severe constipation. After 12 months of easy pooping she suddenly STOPPED being able to have a bowel movement without agony. "Don't worry Mommy! Just go home. Give her Miralax." say the doctors. Crap has been on my radar screen for a loooong time. I really don't give a fig about the sum of human knowledge - just helping a parent here or there, as I wish someone had done for my kids.

And Nancy? "I honestly love you...."

[foe2Hg]

Hi Kim,

Good to hear the girls are doing well! As far as any negative reviews you may get..don't worry. Science is backing up your "crapisode" word with less Seinfeldish terminology. You just say it better and much more REAL.

The medical jargon..words like Steptoccocus, E-Coli, Clostridia, candida, gut pathogens, microbes, toxic metals, etc...are just so boring and do not show the effects as well as "crapisode." Just give it a few years and I bet pubmed will have over 100 citations for it. Keep up the fight!

Teresa

[pextersmom]

Miss Kim,
Where would we be without you? The name alone ("part doo") sent me into a fit of giggles. You can speak for me anytime. I had one child...my eldest with autism. you have three. I have no idea how you do it all, take care and love them and keep us all laughing and keep life in perspective. Thank you!
A great day in the world of autism. A great day.

Thank you Kim!
xoxox
Baxter's mom

[nhokkanen]

Your cancer analogy dovetails neatly with Jenny McCarthy's statement on Oprah today comparing biomed treatments to chemotherapy. These kids are not "one-size-fits-all." A treatment that works for one may not work for another, but we try them anyway.
A few years back I took my son and mother-in-law out to lunch... what a challenge. The little boy with autism, the grandma with Alzheimer's (who later died of cancer) and me with clinical depression. We were the toxicity table.
To raise public awareness of the need for research on treatments to eliminate toxins, perhaps the autism community needs to take those crapisodes to the streets.

[mogrammy]

Kim, thank you for taking us into your living room(and bathroom) to meet you and your family.
The personal touch is what makes your writing so special and the humor always just makes me want to read more. Thanks for sharing the joy and the poop in your life.
Maurine
South Carolina

[dadw5boys]

When strangers look at our child with disapproval because of his disability we take comfort with the fact that he is the most loving and innocent human being, without an ugly bone in his body. Always happy and never angery even when ill.

[Thrillcat]

It's funny you mention autism AND cancer. I have an 8 year old with autism and my 67 year old mother was dx with pancreatic cancer this year (the deadliest of all cancers). There are many similarities.

The most important is you have to have HOPE and not give up. Attitude is so important. You also have to have a sense of humor- which you definitely have Kim :)

[jennyg]

People should walk a mile (no, how about across the country) in your shoes before ripping into you for your interpretation of life as a mom of girls with autism. You just calls them as you sees them, and not only are you entitled to do that, you should be applauded for it. And how fabulous that the girls are making their way in the world!

[SamaraLeigh]

Hey Kim,

Thanks for giving us a glimpse into "the life." It really us different for everyone. My 18-year-old is still in complete denial about his ADHD and Asperger's so saying either word aloud - even when it is just the two of us - is a cardinal sin for me.

I'm glad to hear that your daughters are doing so well. Sharing stories of ups and downs helps other families on the spectrum to see that:

A. Things could be worse.
B. Things do get better.
C. There is something to smile about - if you just look for it.

[Stagmom]

SamaraLeigh, thank you. I like your ABC's. Say, you simply MUST get this book for your son: "Look Me In The Eye" by John Elder Robison. The book debuts next Tuesday, you can order it now. John was diagnosed with Asperger's at FORTY! (Google him) His memoir tells about his childhood, how he navigated the world, his school years, his careers, his successes, his failures and he is SUCH a magnificent story teller. I think your son would benefit immensely from this bookm knowing he is not alone. Truly. Yours, KIM STAGLIANO

[BarbaraFischkin]

Kim,
I am honored to be among the first to comment on the much awaited follow-up to your classic Crapisode Episode. I read you and hear great balance. You love your kids for who they are, celebrate their accomplishments and try to alleviate their pain. Who could want more in a Mom? And on top of it all, you are funny. Funny and good-hearted. Kids are embarrassed by parents who can't/won't/ don't do all of the above. Not by humor like yours. Humor makes kids feel part of a family - and in yours your children will know that Mom can take it, as well as she can dish it out. That's called love.