Our Family’s Dirty Little Secret

Mark’s brain was not sleeping anymore. He thought he was a state of the art exploration rocket. He was, after all, doing what we have been teaching him to do: be aware, investigate, move. Even with the jib skid slowly evolving into a crooked walk, he “ran” and never stopped, nor did he ever look back.

It was as if the previous years of stimulation, patterning, and mental and physical therapies had ignited his jets over night. All I can say looking back, is thank God he was not nuclear. Mark was so little for his age that exploring anything higher than two feet was still not an issue. However, there was one fascinating landscape, which lent itself magically to his attention. His own body.

This activity could happen in a split second. No human mother could have prevented it depending her own ingenuity. If I smelled it, it was already too late. Mark was intrigued with his own craps. He must have remembered our voices asking for the one-millionth time about every object that came his way, “ Markie, what is this? What can you do with it?” And the smearing would begin.

Imagine turning around to see your child covered in stinking feces. Arms, face, clothes, bedding, walls, toys. I would gasp and then scream in horror. I think it was the first time I had to use the word “NO” to Mark. Of course, I scared him to death with screaming that word in tears. Then he’d start howling back at me and I prayed there would not be any brown stains on his toddler teeth.

Mark never slowed down, or stopped moving at this point. He learned, to our continuing amazement, how to move a stool (no pun intended) or some other object to a door and to open it. Everyone knows about the “Terrible Twos,” and we went through them with Ryan. But raising Mark had us in slow motion developmentally as well. We weren’t ready for the “Feces Fours!”

This read Doom, complete with thick ropes of cobwebs, screeching bats, and flying spears. In fact, Mark’s perfect care provider would have been Indiana Jones. (If I could have used a whip like Indiana, I could have lassoed him from across the room and pulled him to me, instead of running and sliding into him to prevent some disaster. We were signing and using very different vocabulary words now: mad, bad, no, stop, slow down, sorry. With the language comprehension of a two year old, Mark was keeping up with the new lessons the best he could. On the other hand, his lack of comprehension seemed to give him cart blanche to follow his every impulse and cope with the fall out. Just to comprehend that we were angry was a trial for him. Being in trouble was a meaningless concept at best.

We instituted the time out program to help make our point. It was harder on us than on him. The person who timed him out, put him in the corner facing the wall, and had to stand with legs placed like a jail door. Needless to say we suffered the imposition of being timed out just as Mark did. Mark saw no logic or reason for a time out, indignantly tried to escape. He’d start up his whooping complaint hoot and tried to squirm along the wall and out of the corner.. This kept us sliding from side to side to close any escape gap. He was the hockey puck, and we were the goalies. Note: the word jail(er) id derived from goalie! Eventually, we wedged him in with two kitchen chairs, repeating with words, and signs, the transgression and the correct behavior. Our sign book didn’t have the hand sign for poop, so we had to embarrass ourselves and call the signing teacher. (But, we didn’t share our secret with her.)

Most parents know these times are temporary, but parents of special needs children don’t always have that guarantee. The dark image of a impulsive child in a man’s hairy, swarthy body broke my heart. Besides, the general consensus was that Down syndrome people were sweet, loving, and docile. Why did my child look like a chimp, and act like a Tasmanian devil? What if he grew up to be a gorilla? How would I control him then? With every behavioral crisis, I wondered,” What will happen to him, to our family, to him, if he never changes?”

Inspiration!

There are two famous moments in movies for me. The first is when Scarlet O’Hara raises her fist to God, and swears she’ll never go hungry again. The second is when Annie Sullivan screams her frustration to Helen’s father, “Mr. Keller, she learns because I expect her to learn!”

It must have been the Irish accent of Annie Sullivan’s ghost that made me rent the Miracle Worker again and again, and watch dumbfounded as she taught Helen Keller language, manners, educated her, and “civilized” her. Here then, were the keys to educating Mark.

With determination inspired by Scarlet O’Hara and Annie Sullivan to succeed, we continued to let Mark explore, and enjoy the world, but the teaching was intensified, and expectations kept high. Cause/effect patterns were our main teaching focus. We too, did the best we could to keep after our latent toddler, but his poop smearing had to stop.

Mark awoke at five A.M. (he must have been part rooster too.) He was up intermittently during the night exploring and playing all over the house as well. We were all exhausted and sleep deprived. With his new doo doo fascination we had to “man” him every minute or face the consequences.

We felt terrorized.

What would we do if Mark never stopped doing this? We felt martyrdom looming, but without the saintly acceptance that his habit was sent to us from God as a test. No, we had already rejected the idea that Mark was sent as a heavenly test from God. People cooed over us all the time, saying,” God sent Mark to you because he knew you were special, and you are the right parents for him.” We hated to hear this. If we were such great folks, why didn’t we get a child prodigy who finger-painted in colorful oils, on canvas?

Mark’s poop art was at least hidden from the general public for while. Our family’s dirty little secret was let out of the bag though when Mark gave my favorite chair a makeover from blue chintz covered in wildflowers to crusty brown all over. We were minutes away from going on vacation; Mark got lost in the shuffle, but had found something to keep himself busy. In tears, I called a few upholstery cleaners. Only one would tackle the job. I had to leave the chair in our backyard and the man would clean it out there. He promised us it would be like new when we got back, and it was. He promised he would not tell any one else, and I will never know if he did or didn’t.

The most traumatic of these times was an afternoon I promised Ryan, who was six, we would work on a school project together. However, Mark was having nothing to do with nap time. Ryan and I were already worn out from chasing and monitoring Mark all day, and we were in desperate need of some respite.

One of the most delicate operations of being parents of a special needs child is balancing time and attention with the other siblings. I believe this is a losing battle, but if Scarlet O’Hara refused to quit, why should we? I shook my fist in my living room and swore, “ As God is my witness, I’ll never go hungry again!” What I meant was, I had two sons, and one would not steal all of my time from the other. I let each word slip from my mouth with all of Scarlet’s passionate sincerity.

Down syndrome help blogSo, Ryan and I kept putting Mark in his bed and shutting the door, and Mark would keep getting out of his room, running down the hall and distract us. After fifteen minutes, we were crying with weariness and grief. I desperately wanted to focus on Ryan, and he was desperate for my attention. Suddenly, we were having a war with a three year old and Ryan and I would not give up the fort easily.

Can’t remember whose idea this was, but with tears streaming down our faces, we popped Mark into his bed, ran out of the room, and tied a rope from his doorknob a door on the opposite side of he hallway. NO matter how clever a boy he had was, he could not get out. Sinking this low was cause enough for more guilty tears. However, if Mark wanted a war, we were bigger and smarter than he was.

No two people ever felt so smug as we did that afternoon. We finished the project and had time to cuddle on the couch to watch an entire movie all by ourselves. All guilt aside, it was one of the best and worst afternoons of my entire life.

After a memorable three-hour nap, we heard Mark calling us and trying to work the doorknob. We untied the rope, and opened the door. Mark reached his arms up in joy to see us. But by then we were already screaming “NO OH OH OH OH NO NO NO NO OHH NOOO!”

He was covered in crap. His entire room had been finger-painted a stinky earthy brown.

My first instinct was to protect Ryan from such a sight and quickly closed the door. We went to his room and commiserated for quite awhile. I didn’t defend Mark much. I finally left Ryan to recover, and got back into Mark’s room with a bucket of disinfectant -before he could find us. Needless to say, developmentally delayed or not, he had exacted a fitting revenge. And the war? We conceded momentarily.

A few weeks later, I found the courage to admit to Mike Mann at Alta California Regional that Mark had become relentless in his doo doo hobby. Of all the challenges we knew we could live with , we could not live with that. He referred us to a behaviorist agency who sent out a nice Sister of the Oath.

Mark had coincidentally done a finger painting session minutes before she arrived so I wrapped him in an old plastic tablecloth of huge purple flowers, and left him sitting confirmed in his high chair so she could see the problem. Sighing, she said she’d seen it before; this was her specialty. SPECIALTY? This was a Real Sister here!

OKAY, she signed again, Mark can be taught not to do this with an appropriate reaction from you. From me? Hellllohhh! Appropriate reaction? Didn’t most people draw back in horror and scream at seeing another human covered in his own feces?

It was simple. Get him to connect this fun activity, with a personal inconvenience. Eventually, he would connect poop play with discomfort and stop playing with it. No violent reactions from us are needed. Each time Mark doo doos himself, we were to immediately but quietly and gently raise both his arms in the air until he showed he was uncomfortable and complained about it, while we said,” No hands in your poop.” This left “signing” the message out of the question at that point. Several times during the day we were to repeat in words and signs, “NO hands in your poop.”

It made sense to give him this message during the day, but hold his hands up in the air? I looked at Mark, trapped in the high chair. You want me to grab his poopy arms and hold them in the air? Can you show me what you mean? “No,” she replied with alarm. I can’t because my job protections prohibit that- so many germs, you know? I thought about the acres of feces covered items I had cleaned without gloves in the last few months. I was lucky not to be in the hospital! “Oh” she cried out, I almost forgot!” And she pulled out a box of latex gloves for me to use. Yes, of course, while my crusty brown child is wandering through our home looking for something else to poop paint, I will remember to carefully put on my protective rubber gloves!

For a few weeks we did this without fail, exactly the way she described. Holding on to Mark was difficult in any situation. His divine life had re-begun when he started sort-a-walking, and he rebelled against any situation of constraint. There he was, slippery in doo, and stinky to boot; I would try to keep a grip on his slippery brown arms while repeating the mantra “ No hands in your poop.”

We got complaints all right. Mark sounded off like a siren, doing a brownie jig at the same time trying to get his arms back to himself. The neighbors could hear it. They’d call! Everything all right over there? What? Did they think we were abusing Mark? “Sure” I’d say. We are just a happy NORMAL family over here, nothing to worry about.

Let’s not forget whom we were dealing with. This was Markie Sparkie of the Divine Raisin Test. We gave him time. We stuck to our end of the strategy. We expected him to learn, and he did. It took months, and for about a month we were a happy, normal family again.

Feel free to share this story!

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Look for something new

Hello beloved readers, please excuse the delay in fresh content. Look for new posts within the first week of September. In the mean time, feel free to ask me questions about raising a child with Down syndrome. I would be happy to engage and help out where I can.

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Welcome new readers!

Mark is now 24 years old. These are the stories I would share with my Down syndrome support group, family, and friends as we journeyed on our adventure to raise Mark. Some are funny and some are bittersweet, but all are the fiber of our family history.

When people meet Mark they compliment us about what a wonderful young man he is, and add, “He must be VERY high functioning!” Every time they said  this, I give a little gasp of appreciation, but say to myself,” Good God, he did not start out that way!” Through the years friends and family have encouraged me to write Mark’s adventures down. So I did. I was suddenly relieved from my teaching career in 2004, due to a brain aneurysm.  So, with time on my hands, I wrote the stories  down  in 2006,while I was recovering and trying to reinvent myself.  This  blog set up was my Mother’s Day present from our oldest son, Ryan. Ryan is the director of DownStream Fishing, a non profit that provides a fishing experience for  children with Down syndrome.  Anyway, Ryan set it up for me and got me going. I started posting stories randomly, but have received some support from readers to stick with a loose chronology.

So it begins with “Mark was Born” and we are now posting stories from preschool years. Yes, raising Mark was difficult at times, but with the advantage of looking back, I know that God did not give us Mark to raise because he knew we could do it. Heaven can be a bore sometimes, and we were the  earthly drama/comedy channel entertainment for all heavenly beings …and those on earth too. Go ahead and laugh!

SPARKY is Mark’s nick name. Mark is now living in a group home across town, attended regular classes at his neighborhood schools with an individual aide. He left a wake of chaos, love, laughter, and bewilderment in whatever he did! He attended every single school function, field trip, school dance, including one Junior Prom and two Senior Balls . He graduated from high school without passing any math classes,  attended a wonderful after high school program called NuStep for job/ community training skills. He has worked both in his community, and in the sheltered workshop (PRIDE).  If you are raising a special needs child and feel alone out there,-stay tuned. Talk to me and I will try to coach a little bit. It is all about LOVE!  ( oops, that is such poop!)  It is all about blood, sweat, and tears. Nahhhh, its all of it!

Sincerely, Carmella Miller

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Family of the Year

Every parent waits for their child to achieve developmental milestones.   Infants and toddlers eat up their cheerios and creamed spinach and morph into little people.  By second grade our first son, Ryan, did this without fail. He was a stellar type of child in every way. We had created the perfect beautiful, yuppie male future human.  At seven, he showed remarkable intelligence, a penchant for the natural world, all things connected to the life cycle of frogs, and architectural engineering. For months in the second grade, Ryan rolled newspapers into tubes and used them as building materials for cathedrals that towered inside our living room, and… he did it by just taping the rolls together with scotch tape! He was a loving child with a special place in his heart for his little brother Mark who was “SPECIAL.”

In the spring of the second grade, Ryan did something truly amazing.  He wrote four sentences to win a contest.  Every year our Nevada County Fair had an essay contest for the elementary kids. The topic: Tell why your family should be “Family of the Year.” The prize: a complete FREE week at the County fair for the aforementioned wonderful family.

I received a call at work one day from the secretary of Ryan’s school. My breath stuck in my throat as I prayed he had not thrown another rock and hit some kid in the forehead with it…(he had done this on the second day of kindergarten)….but alas, she told me of the winning essay. I was teaching English. An essay by OUR Ryan?  Did his giftedness have no bounds? An essay?

And so the four sentences were published in the newspaper.

I love my mom because she works hard.

My dad helps me with the hard things.

I love my brother Mark because he hugs me when I get hurt.

He is the best brother in the world.

Ryan's earliest accomplishment... and realization

We received our VIP name tags on fancy lanyards and an invitation to a VIP ceremony where everyone could meet the “Family of the Year.” We were thrilled that Ryan could be in the spotlight for a change. Children with special needs siblings are often lost in the focus needed for their siblings. Here was our chance to dote on our son Ryan.

The second we heard about the VIP ceremony, we lived in misery. At four, Mark was newly walking and still doing the jib skid as needed. He was social, curious, impulsive, and impatient, toileting was incomplete, and he hated being held anymore. Holding him was against his sense of independence and right to freedom. Whosoever impinged on his rights would have to pay the price! Yet, we could hardly be Family of the Year if we left Mark home!

On the day of the ceremony we spit shined ourselves, packed a bag of amusements for Mark and showed up 15 minutes late on purpose. It would be less time for us and everybody else to have to cope with Mark should he throw a tantrum.  Walking to the stage through the bustling fair events revved Mark into a storm of excitement. We tried to keep him calm; we could not put him down for fear of losing him in the crowd, or getting filthy. We had a stroller, but he wiggled out as soon as we buckled him in. (Some skills were evolving too fast).  We lived in fear that Mark might have a poop disaster at the ceremony.

It was over 95 degrees and sweat ran off our faces and soaked our nice clothes. Ryan never complained. No matter how stressed Steve and I were, we tried to keep up the joyful mood in spite of the fact we were nearly in tears. Once on the stage, we were put behind a curtain and asked to wait for the fair chairman to announce us. A photographer waited to snap our picture as were received our certificate. It was hotter behind the curtain that outside, and Mark could hear the crown on the other side of it. I felt frustrated to want to embrace Ryan and show him how proud I was, but Mark monopolized my attention without mercy.  Steve and I passed Mark back and forth for 20 long minutes more. Then, we knew the worst had happened. Despair should be a term in a book and never felt in real life, let alone in public! Our hair was a mess, our clothes wet and wrinkled, and we smelled crap!

Mark  had made a giant crap in his pants at the exact moment the announcer finally called us up to the front.  We had used up the big baggie of wipes trying to keep all of us clean and cool, and had no water to clean him up.   Poor Steve was trying to hold onto him but lost the battle. Mark slid to the floor and  jib skidded past the curtain and a few times around the stage while the audience took a few steps back from his poopy smell. He blessed the crowd with yelps of delight, fan fare waving, and celebratory hoots.  Steve, Ryan, and I stood holding hands, our smiles frozen in spite of the heat. Ryan read his “essay” to the crowd, and the photographer gave us a minute to smooth ourselves out, but we hadn’t had a chance to change Mark’s pants yet…. but the photographer was behind schedule too. So, we embraced and smiled for the camera as the 1990 FAMILY OF THE  YEAR!

I realized at that moment, that Ryan deserved this free week at the fair more than any of us could have dreamed, and Mark was the kid with the best brother in the world!

Now, look at Steve’s expression in our newspaper picture!

Make sure to read post to see why Steve's face is a bit off

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Fairy Tales

As a toddler, Mark loved listening to bed time stories infused with signing and sound effects.

We would add anything we could that he could hold that related to the story. His first journey into fairytale land was Jack and the Beanstalk.  For Jack, we had a basket with beans, hard boiled egg colored gold, a plastic harp, a bone, a plastic cow, and a piece of plastic vine. Every bean, every vine, every Jack he met was part of his internal fantasy that we were giving him real information.

Before we realized it, Mark would become the timeless characters of the stories. With so few spoken words, we taught him the signs for everything he pointed to in the book about Jack.  Before we knew it he was signing multitudes of words generated from an insistent need to learn the names of everything connected to Jack. Curiosity and imagination had taken root with Jack’s bean stock. Mark always kept five magic beans in his pocket at all times. At first he used pea gravel from the yard, until we went to the store and bought a bag of real beans. He lit up at this get rich scheme. If five magic beans could get Jack rich, what could a pound of pinto beans get him? At least he chose to lock onto the beans and not the golden eggs!

This pattern of living in the fairytales continued until no other character could replace Prince Phillip in sleeping Beauty. By the time Mark was six, he was the consummate romantic prince waiting for a damsel in distress to be saved and loved eternal. Mark was now on the search for his ladylove. His girlie classmates were not very tolerant of being rescued repeatedly at recess from a weird boy who thought he was Prince Phillip. And they were certainly not going to stand still to be kissed awake, or anything else, from the Special Boy. He took rejection poorly and badmouthed them behind their backs,…in sign language.

But he soon found someone with hours of nothing to do but stare into his eyes and wait to be saved from a cruel world. This played out unexpectedly. Thanks to every Disney princess stereotype; he favored pink, ribbons, lace, and taffeta. Anything glamorously feminine caused him feverish wanting. And he wanted to have pink things: Sleeping Beauty bedspreads, Cinderella pajamas, Snow White action shoes with pink glittery shoelaces. I couldn’t just take him to pick out a lunchbox, slippers, or a shirt. I would have to select two socially appropriate choices and run them to a separate aisle as if they were the only choices for boys. It wasn’t all that easy though, he KNEW there were Barbie lunchboxes, he had seen them at school! Teaching socially appropriate gender rules to Mark were weird in that he was already so visibly distracting, what harm could a plastic Barbie doll do? Well, That’s how Mrs. MacDonald felt in the first grade. She generously gave him his heart’s desire without letting us in on her matchmaking scheme.

One day Mark came home with a Barbie doll in his very blue denim lunchbox. Assuming he had kidnapped her by force, I sent her back to school to be returned in his lunchbox spelling like bananas. For days, at two o’clock sharp, Barbie kept returning to our home. Her frizzy hair and constant smile transformed Mark into Prince Phillip. Mrs. MacDonald hoped there would be no harm in letting Mark have the Barbie doll. He was euphoric to say the least.

A week later, I got a call from the school secretary; “ Could I please buy Barbie some clothes? She had been naked all day and was causing a commotion among the first graders.

Steve and I did better than that; we gave Barbie back to Mrs. MacDonald permanently, with thanks for her thoughtfulness. If all the boys in her class had Barbie dolls, Mark could have one too, otherwise it was just not appropriate.  He would have sessions working out his heartbreak. We could hear him lamenting in his room, “youfuhgrls,sorrynotoppopiet byebye.

Once again, we had to agree with him. Who got that wrong?

Beautiful girls are for boys!

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