2011 National Down Syndrome Congress Convention

Check out the web site for the National Down syndrome Congress Convention- I’ll be there and Mark will be attending the related but separate convention for persons with Down syndrome. He went last year and had a blast. I highly recommend that parents/guardians involved with Down syndrome make the trip to San Antonio, Texas -August 5,6,7 2011 and treat yourselves to stimulating workshops covering the gamut of all things concerning D.S.and spanning all ages. This will be my 5th convention and Mark’s second.

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Beware the Well Intentioned Rule: “It Goes in the Water” –Not!

After the toileting episode with Mark and Briar, I felt a superiority wash over me. I felt I was getting the hang of simplifying life’s little mysteries so Mark could understand the world, and we could understand his world.

In general, potty training Mark had been a contest of what we could do to just keep his bottom on the toilet seat. If the ass is not over the hole, making a poop does not count as successful potty training. Mark resisted any activity that required his body be still.  So, like most parents, we sang potty songs, read books, did clapping games, hand puppet shows, performed toe ballets, practiced anything that needed practicing, pretended to be airplanes and motorcycles, made fart sounds for motor sounds, and planned our next meals. Oh. Don’t you remember doing so many things in your bathroom during potty training? Too bad you missed this quality time with your child.

Eventually, we heard the musical sound of  “plunky dunk” and would celebrate long and loud,– repeating the rule, “ Yay, Poopie goes in the water!” Like most toddlers Mark could not wait to see his little turds whirling in circles into the toilet’s deep beyond. “See Markie, Poopie goes in the nice clean water!”

Go ahead! If you are thinking what I’m thinking now, you should have been Mark’s parent.

Alas, we again found ourselves in the spotlight of Mark’s divine interpretation of the rules as we gave them. He had learned “No hands in your poop,” so we launched confidently into, “Poop goes in the water.” Our blunder: it should have been, “Poop goes only in the TOILET water!!!”

A while after he committed his craps to the toilet, he again modified the game. In the toilet, the floaters vanished quickly. But in the plastic pool in the backyard, there was time to watch the “bob and swirl” behavior as he pushed a floater around the rim of the pool with his little scoop shovel.

Mark would be signing and saying his new rule: Poopie goes in the water! What kind of praise or reprimand would be appropriate? It was clear that prevention was part of  the answer. I knew about the term Extinction, in that it related to training away poor behaviors by focusing on the good deeds and working to fade the poor behaviors into oblivion. This meant sharpening the skill sets of my maternal vigilant eye. The eye had not slept well in years, and now she had become demoralized with all this focus on feces. She cried. She called out to the heavens, “Why me? Why us?” She made promises:  “ Please, name your price, and help Mark just learn the simple rules of life! I’ll sleep on my knees, on rice kernels; just get Mark potty trained like every one else’s kids!”

Posted in A Mother's Diary, Down Syndrome Help, Raising Down syndrome Boy, The Markie Stories | Tagged , , , , , , , , , , , , , | Leave a comment

It Goes In The Water! Down syndrome Potty Training

During the time of Mark’s confusion with feces art, we continued to teach him the art of “pee pee” training. He sat on the potty at Pre School regularly and had some successes. We did the traditional rituals that surround toddler pee pee potty training and for the most part he got the hang of it.

Soon it was time to make a big boy pee pee like Ryan and daddy. Of course, the men of the family took care of demonstrating the stand up technique. Once we found a stool he could balance on and stand higher than the toilet bowl, he was eager to do it. Mark had a good aim when he was following the manly demonstrations. But when alone, he would become distracted by the sound or the action shooting out of him, and the bathroom was beginning to get little-boy stinky.

I found some little papery sponge-like floating things at Longs Drugs, cut into boat shapes for little boys to “aim” at. How perfect was that? I dropped one in the toilet, Mark giggled as he fired his pee pee at the little boat. I spent long times in the bathroom directing Mark to topple the little paper boat over. When he was done, the pee was all in the toilet, and the little boat went bye-bye down the deep, black hole at the bottom of the toilet. We giggled and laughed so much at pee pee time, I felt cheated! Boys always had the advantage of being able to pee standing up. They always had more fun!

Mark was so proud to stand up and pee like daddy and Ryan. After a time I began to fade out of the bathroom. Truth is, Mark made me stay out with glares, broken sounds, and a very clear finger pointing to the hallway. I would give him a paper boat to drop in the toilet and follow the direction of his pointer finger. Unsure as I was, I had begun to expect Mark would always share his divine opinions with me. I respected each one as if it was a natural treasure. I worried I was spoiling him; I rejoiced because we were at least communicating.

Very soon, I knew he had modified the pee boat game. The bathroom was stinky. So, I began spying on him from the hallway to see where the malfunction was. Lo and behold, Mark had created a different game with the pee pee boats. Instead of emptying his bladder on one boat, he had been dropping in fleets of little ships from the box and watching them duck and speed around as he propelled them with well intentioned precision directed urine streams… that splashed everywhere. So, I tied each boat left in the box, with one inch of thread around it, and attached it to a rigatoni noodle. The noodle anchored the boat to the lowest center of the toilet bowl and it couldn’t move much. I had re-assumed my parental power. Mark learned to tell us, “Time for Pee Pee,” in words and the hand signs! And, Mama and Daddy were the only persons who could reach the box of paper pee pee boats. What other joy is there for a parent?

Needless to say we were anxious to finish Mark’s potty training. However, things got complicated. When he made a poopie in the toddler potty on the floor, it was too close for … “touching.”(See previous story, Our Family’s Dirty Little Secret…) He was still so little for his age, and without any capabilities of the muscle tone needed for balancing himself on the big toilet two feet off the floor. We were now deep into the Special Needs World of Modifications. Embrace modifications as freedom tools! WE always met Special Needs parents who thought modifications were an admission of failure or an embarrassment. Go figure. We learned to find’em, invent’em, and USE’EM!

Never hesitate! We put out the “APB” for a modified toddler toilet seat and BINGO! Some friend of a friend passed down this blessed contraption: it was like a stile that got a person over a fence except it was a toilet ladder. It was red and blue, had three little steps and hand railings all around. The little steps led to a toilet seat that was adjustable- so it would fit two sizes of little bottoms. We placed this over out toilet and watched Mark climb up and balance on it easily. This wonder toilet had no manufacturer name on it so I always thought it fell out of the sky like most things that helped us raise Mark.

So, we felt hopeful that maybe by the end of four, Mark would never need diapers again. Yet, after our recent poop art episodes, we were superstitious about how to praise Mark or encourage him to voluntarily make poops after acting deranged for the previous year when ever he had a bowl movement! We brainstormed carefully about which terms to use: Craps? Shits? Doo doo? I grew up with caca; Steve grew up with BM. So we went with the day care provider’s gentle word, Poop. Besides, he had certainly made a connection with poop and, “No hands in your poop.”

We researched how to break down the task into its smallest steps, which was essential for Mark to even begin to comprehend this new activity. We would start laughing and just hoped we got all the steps in the right sequence. We actually drew a life size diagram for him about his digestion route. He was fascinated, and traced the route from mouth to stomach to his butt. Finally, we decided on M & M rewards (the only food reward he ever got). For the time being we would wipe his tush for him….

We had a little dog, named Briar. She had been house trained without a mistake for a dozen years. She would sit with us in the bathroom and wag her tail as we praised Mark for his effort to sit still more than 30 seconds, praised farts as successive approximations, and did rooster struts when he actually dropped a turd in the toilet. Sometimes Briar got an M & M just for helping keep Mark amused on the toilet seat.

One day, Mark ran up and yanked on me breathlessly saying, and signing, “Brower pooped! M & M mom!” I was led to the bathroom featuring a kid-sized poo on the floor. Brower was nowhere to be found. “Smart dog,” I thought. If it was hers, she wouldn’t have stayed for the M & M? But was Mark telling his first lie?

I handled it so coolly I will never forget how ingenious I felt. “Uh oh! Poop goes in the water!” I called the dog in and put her paws on the toilet seat and repeated ”Poopie goes in the water Briar! And Mark chastised our poor dog for several minutes signing and hooting the reprimand, “Poopie go water Brower!” Yes, I finally gave poor Briar an M & M and sent her outside to recover. No, I didn’t ask Mark to help clean up his mess for obvious reasons, but he did not get an M & M either.

Posted in Down Syndrome Help, Education, Raising Down syndrome Boy, The Early Days, The Markie Stories | Tagged , , , , , , , , , , | 1 Comment

Writer’s Block Scenario

Thanks for the all out requests for Markie Stories! I have not had as much Writer’s Block , but as much as life has been busy. Mark and I have been out rocking the community to find out where he can be the most independent as possible. He signed up for hip hop dance lessons, passed out 15 job applications Mark is sure he going to get 15 jobs, and let’s hope he does! It took me hours to program his phone so that he could call for assistance wherever he ends up in town locally, or in any other foreign country. Don’t laugh, Mark once hit enough random numbers on our phone to get an operator in the COUNTRY of Greece! Never fear, every day of raising Mark is burned into my heart. I will write it all down as long as someone is reading. Needless to say, the last few weeks have generated even more Markie Stories. This next one is for Karen and Griselda. Thanks folks! Carmella

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Writer’s block…

Hi all, this is Ryan speaking. I am Carmella’s oldest son and administrator of this blog. I think I need to summon the power of group motivation and encouragement to help my mom get over writers block. We all love these stories and want more, let’s let her know what a great job she is doing and that we are all waiting for more.

Feel free to post comments here and let her know you want more! Heck, maybe even throw out some ideas. Is there anything you would like answers to when it comes to raising a child with Down syndrome?

Thank you!

Ryan

Posted in Down Syndrome Help, Raising Down syndrome Boy | 2 Comments