What About Marcus

My fifteen year old son, JT, ran cross-country last year as a freshman. He fared well for his first year. He wasn't the fastest runner but he medaled in each race. His last race was his best in which he came in tenth out of 150. He was always proud of his medals. He was proud because he learned early in the season that no medal came easy. It took training, sweat, a lot of pain and most of all heart before that medal, even if it wasn't first place, was won.

JT's lesson definitely has its application in our life with my autistic son, Marcus. You see, since January of this year, Marcus has lived in a small family home. In so many ways, Jt's medals symbolize this change in our home . My other three children get the attention from me they need. Everyone in our home is safe. And most importantly, Marcus is safe. So yes, his move has been good for the family and for him but we all have gone through lots of training, pain, and sweat. And most of all, the strength of our hearts has been tested.

I have started a blog on Marcus so many times over the last several months. Invariably, each ends up as a draft in the margins of the page. It has been a grieving process to go against my belief system and my heart and deliver my son over to strangers so that they can care for and save him when I cannot. But several months have gone by and it is time to share and tell more about Marcus and me because this is the promise I have made.

One Saturday afternoon in June when Marcus was ten, he had his first violent fit. We didn't see it coming. My fiance was over, my other three kids were milling around the house. Marcus was doing his usual pacing, and flipping of a sock, (his favorite "stim"). I sat on the couch in my small living room watching him pace. It happened just like that, without warning. He started screaming at the top of his lungs like someone had stabbed him. His scream was loud and desperate. He began jumping with both feet hard on the floor. I jumped up and yelled "Marcus stop!" He didn't and couldn't. He screamed and this time, he ran across the room and crashed into the wall. My fiance was in the room by this time, and he yelled for him to stop. Marcus was about 75 lbs. at this time and about 57 inches tall. But he seemed to have mythical strength for a kid his age. For me, his aggression was more than frightening. He screamed again and this time began banging the sides of his head with his balled fists with all his might. This is when my fiance and I grabbed him and forced him to the floor on his back to protect him from serious injury. He screamed again. I remember looking into his eyes and seeing the helpless, vacant glare he had. I kept asking, "What's wrong sweetie, what's wrong!" I wanted to fix that stare and stop his screams that were so desperate, and his movements, so unabated in their force.

This scene would repeat itself many times over the next three years. As Marcus grew, his strength increased. The fits became increasingly more difficult to control. It also marked the genesis of a heart wrenching ride into prescription medications. Risperdal and clonidine were Marcus' only medications up to that point. But they seemed to have lost their effectiveness, especially with the onset of Marcus' fits. Many doctor appointments where trial and error was the medical code of conduct never seemed to balance Marcus' behavior for any significant amount of time. Worst of all was the unforseen side-effects of the wrong medication or dose.

911 calls. Hospital visits. All night stays in emergency rooms is the short list of what ensued before our family got enough attention from the medical profession and our local agency to get permanent help for my son and for our family.

We see Marcus each weekend now. We are working up to overnight visits. Right now he is quite content, after a few hours with the family, to go back to his small family home. So we are taking it slow. There is no conclusion to this blog because Marcus' story is ongoing but I will say that for now we feel like we 've won a medal, maybe not first place, (what's that? - to be healed of Autism?) but certainly a medal that sees Marcus and the rest of our family safe and healthy.

Why I Write

One escape that brought healing and developed me as a writer came from the weekly routine of going to church – without my parents. I would wake up at eight in the morning, and be dressed and ready for church by nine. I would walk down the hallway, counting eleven steps to the end of the plastic runner. I would turn right, and walk four more steps down the short hallway to my parent’s bedroom door. I’d knock three times. At the door, I always obeyed the demand of the air force sergeant who was my father that I must ask for a ride to church every Sunday or I wouldn’t be able to go. My request every Sunday was, “Daddy, may I have a ride to church?”

Of course I was unable to know the impact of Sunday school in those days except that it gave me a feeling of independence from my parents for the short time I was within its walls. Now, as an adult, I know my love for the poetry and music of words was honed from reading the King James Bible. The questions of why we exist and how do we exist kept me searching and questioning for the best way to live. The metaphors, paradoxes, parables that explained these questions formed my analytical skills. The Bible’s story about the origin of sin, its symbolism of darkness and light, its insistence that there was a God that both loved me and would kill me if I misbehaved provided the foundations of the narrative I strive to complete now. Although I was at once terrified, confused and intrigued by this famous book, I gleaned from those early Sunday school classes that life has a larger meaning than what I could see in my immediate, often painful existence. It gave me hope. I began to breathe in a philosophy that life was to be lived out as truthfully and as honestly as possible. I concluded that truth comes through seeking, reflecting, and chasing it.

With that said, my personal search brings me to the realization that my narratives must explore the journey to truth. Whether it be the truth about the African-American woman’s fight to selfhood. Whether it be the truth about breaking generational curses. Perhaps it is the truth that man limits and destroys God’s plan that this earth’s bounty should benefit all mankind, and our common spiritual inheritance is that we were all created to have dominion over the earth, including the African American. I want to write how we all are part of a larger narrative where one decade – or fifty decades – cannot crush the human capacity to live fully and truthfully. Of course, as I explore these positions and possibilities through writing, I expand my own boundaries and lift the psychological limitations that were placed upon me. This journey, this narrative, is my experiment to prove that Jeremiah 1:1 is gospel. God told Jeremiah, who doubted his own purpose and authority over Judah, “Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.” The beauty and irony of this is, of course, I control the narrative.

On Writing

Hah! I read Steven King’s A Memoir of the Craft On Writing and feel I need to overhaul just about all I’ve written on Sophie so far. Dang! It is a great book. Every question I have had on writing my first novel, he answered succinctly.

Autism, Marcus, Me

As the signs of autism became more evident to me and my husband, we began to seek intervention. I called our local agency that handles special needs’ kids from 0-3 and said I needed my son evaluated. I told them, “I think he shows signs of autism.” An appointment was made and I took my son in for an evaluation. This evaluation determined that he had mild retardation and/or pervasive developmental disorder. (To this day PDD seems a vague and suspicious term). I remember Marcus receiving services and being evaluated again at a school site. It was actually the school district that officially gave Marcus the diagnosis of autism. With that diagnosis, we were able to put him in a special needs class at two-and-a-half. And so his “early-intervention” began.

Those are some facts from my now fuzzy memory of that time. Now here are some emotions. I felt punished. My older son, only 2 years older than Marcus had delays as well. However, he was doing quite well. At three years old, he was in an excellent communicatively handicapped class in Oakland. The teacher was dedicated and skilled at teaching the kids in her class to talk. Every minute of every day was spent on language acquisition. My older son’s success convinced me that intervention was all that was needed since he began to speak, play appropriately and was beginning to show signs of being well-adjusted. I felt hopeful, triumphant and proud. Then came Marcus. Why did I have a son who I could not make whole? This was my question. My answer was that I was being punished by God. I thought of every sin I had ever committed and asked for forgiveness in hopes my son would talk to me, play with his siblings, go to bathroom on his own and do everything else that is on the list of what is deemed “normal”. I felt guilt. After all, I was his mother, I must have done something to prevent his healing.

The times when guilt reared up and taunted me the most was at the IEP meetings, the meetings where the “team” - myself, and everyone else involved in Marcus’ education comes together to hash out a plan for his success in the classroom. What those meetings were for me was a time for the team, myself excluded, to reveal as little about available services as they could, and to prove that they were the experts, not me, about my son’s behaviors and educational needs. I wish my next line was, “I was confident, informed, and the best advocate ever for my son,” but that is not true. What is true, is that I felt guilty as charged about my son’s condition (I, the accuser) and I acted accordingly for too long. It took many IEP meetings for me to stand firm for what I believed Marcus needed and to demand services that were within my parental rights to have. This meant accepting the possibility that I might have to take the district to hearing if necessary. I am fine with that idea now, but I was not 10 years ago. One belief and truth is that Marcus has needed a one-on-one aide since he started school - primarily because his attention span is so short, and his activity level is very high. From the start of his education, school districts have denied Marcus that service. It took till he was 11 years old for that service finally to be granted.

Then there were comments. In one IEP meeting, an occupational therapist, who was denying Marcus services throughout the meeting commented that the services she provided didn’t work and she didn’t have any more available so therefore she wasn’t going to be working with Marcus anymore. She went on to say at least four times in a row “the parent has to carry through at home with what the teacher is doing at school or the IEP goals are pointless.” Her point was true. The fact that she said it that many times crushed me. Incompetent, irresponsible, uncaring and lazy is what I heard four times. That comment echoed in my head many days after that meeting. My guess is that the therapist probably didn’t even remember the details of the meeting after her work day was done. By the way, the subject was potty training - one of the most difficult challenges I faced with Marcus.

Well, I feel I should stop for now. I don’t want to write too much for one blog. I will continue on my emotions about Marcus in my next blog about Autism, Marcus, Me. Ciao!

The Opening Scene

The first five hundred words of my novel are written below and I hope they are an enjoyable read. I know how important the first page of a manuscript is so I am very interested in feedback about the beginning of Sophie’s tale. Any comments, suggestions are welcome. Have a blessed day.

Chapter 1

Arkansas’ mid July heat speaks intently to the skin. One can say, it yells at the flesh till it blankets it, making the owner acutely aware of her own movement, and finally cognizant of the relief of a breeze, no matter how slight it may be. The humidity in the air on this particular morning pushed Sophie’s small, eight year old frame off of her bed, with its dampening sheets and pillow case, and into the hallway of the small house she lived in with her mother and younger brother Simon. She hoped she was the only one awake because she could have the kitchen, the ice-cold milk, and corn flakes all to herself. Although it was just her and Simon in the house with her mother, Sophie felt constraint, lack of air. Something in their house made things desperate. She was too young to make sense of it, but she knew it was true. So a simple daily habit of eating cereal took on a deliberateness that to an observer may have seemed unnecessary. She grabbed the milk from the refrigerator, set it on the counter, grabbed the cereal box from the cupboard above her head, and then reached for her special orange and blue bowl and spoon. All was ready for her to begin her small feast when Simon came into the kitchen, eyes eager, hands ready to seize what his ears had heard down the hall, his prepared morning meal.

“Is that mine?” Simon enthusiastically called out as he rounded the corner from the hall into the kitchen.

“No, boy! Get yo’ own! You know Mama said you have to get yo’ own cereal now. You big enough!”

“Oh come on Sophie, make it for me. You do it better than me. I always spill!”

Sophie replied tiredly, “I don’t care if you spill. You have to get yo’ own! So do it!”

Simon stomped his right foot hard on the kitchen floor and said, “Fine, but I ain’t gon’ let you play with my army men no more. You too mean!”

“Yes you will,” Sophie taunted. “Cause if you don’t let me play with your army men, you cain’t play in my city I been buildin’ outside so you might as well quit tellin’ that tale. Just make yo’ food so we can go play. Plus, I will tell you more secrets once we get outside if you act right.”

Autism, Marcus, Me

Wow! The comments I received on my novel excerpt are tremendously helpful. This is proof that it's not the number of critiques but the quality of them that makes a difference. Thank all of you so much!

I will post more from my novel in a day or two. I want to shift to a subject, that thirteen years ago, I never thought I would have the knowledge of or inclination to speak about. It was at 1:15 p.m on Sept 6, 1995 that my life radically changed. At that moment, the first of my twin boys was born. His name - Marcus Ellington Torres. Fifteen minutes later, my second twin, Nathan Armando was born.

They were beautiful, healthy boys. Their development seemed quite normal the first few months of their life. Around month five or six however, I began to see traits in Marcus that concerned me. He would become rigid as a board at times when I picked him up. He sometimes cried for an hour straight as if he was in pain. It seemed nothing would calm him. He seemed afraid to crawl. In fact he didn't crawl until around seven months. He wouldn't walk until fifteen months. I thought, "I hope these delays are not signs of a bigger problem." I continued to watch him closely. As he began to grow into a toddler, I became less worried. He was very active, he played on his scooter with his twin. He laughed with his siblings. He would jump up and down and say "Hi daddy" when his father came home from work. In fact, his verbal communication skills seemed to be on track. I told myself, "I think he is o.k."

Marcus' behavior began to take a sudden turn around two-and-a half. Our family moved from northern to southern California. To this day I feel that move symbolizes Marcus' move into a world I couldn't tap into. He became fixated on objects. He would hold them in his hand all day and stare at them. He began pacing up and down hallways. He lost all form of verbal communication. The glaring signs of Autism were in my son's demeanor. In those days, my attitude was that he would get better. I would give him the early intervention he needed. I would give him speech therapy, occupational therapy, he would go to school. I thought that if I provided these things, my son would come back to me. This was not to be our journey. After that sudden turn - for the last eleven years - our family has lived with Marcus and his severe autism.

This blog is the beginning of another journey. The journey of, through writing, exploring how his life has affected all of us who know and love Marcus. In addition to reflecting on my family's struggle with autism, I also hope to encourage and educate others who are in a similar position, as well as those who are curious enough to read this blog. So ciao, until I blog again...

Here goes

Well, I said I'm plunging in. So what I've decided to do today is post a few hundred words from my novel. What do you need to know? Sophie is the protagonist. Rebecca is her mother. The setting is a small town in Arkansas in the 1970's. Tell me what you glean from the characters, and what you have questions about. Any additional feedback or comments are welcome.

In the summer, Rebecca only did Sophie’s hair every other day. She neatly parted and greased her scalp. Each section she carefully combed and brushed, then with sturdy, sure fingers, she began to braid Sophie’s thick, long hair. Her fingers would begin to work faster toward the end of the plait, a testament that the tough part of the braiding was over. She would braid her hair to the hair’s end so that the plaits would stay put.

“Be still before I pop you with this brush, girl”. No answer. There was no need. Sophie just tried to be as still as she could so she didn’t upset her mother.

There was usually no conversation between Rebecca and Sophie during hair-combing time. This is the way Rebecca wanted it. She managed her children in such a way that casual conversation, which included jokes and laughter, was a sealed gift, which only adults were worthy to receive. Rebecca even reserved her rich, warm smile for adults. Rebie’s house rules kept the children on a strict schedule. In-between meal snacks were forbidden. Friends were only allowed to come over when all chores were done and only on special occasions were they allowed inside the house. Sophie and Simon felt a pressure of being watched at all times, therefore they were self-consciously aware of every move they made. Her house was immaculate and the children had to do their part to keep it that way. Toys were never left out unattended. No clothing articles were allowed to be left out in the open.

This morning as on many other mornings, the sound of the Price is Right was all that could be heard, less the occasional scolding by Rebecca for Sophie to be still. But just as the day’s sun can unexpectedly change a great day for a picnic into a day of cloudy disappointment and worry, the eight year-old Sophie, normally controlled and frightened by her mother’s demeanor, had a whim to speak.

“Momma, Simon was cryin’ last night in his room. Did you hear him?”

“No.”

“I did. He cried a long time. I was gon’ go in his room to see what was wrong. But I didn’t.”

“Um. What you think he was cryin’ about?”

“I think it was the same thing he been cryin’ about since things changed.”

“Yea. Sometimes things got to change and it might make people cry but it is better in the long run.”

“Momma, do you think you should tell Simon more about why my Daddy had to leave? Maybe if he understood what happened he wouldn’t be so sad.”

“I told him what he could understand. The rest has to wait till he gets older. You cain’t make a tree bear its fruit before the tree grows its leaves.”

“Momma did you tell me everything?”

“I told you what you can understand.”