Last week, I was contemplating a degree in Creative Writing; an MFA. Today, I’m contemplating the personal experience of my son’s tragic accident of four years ago. My mind spins with constant activity of new goals. New ideas and new projects, want to leap to completion without the drudging of daily plodding. This daily plodding often becomes Continue reading
Lucho has improved incredibly through his rehabilitation since he acquired a traumatic brain injury in 2013. His hyperactivity is his strength because his drive to be mobile exceeds all other tasks he may attempt. He started attending public school this year on a part time basis, allowing him to be counted for attendance and receive his therapies and FAPE (Free Access to Public Education). I drive him to school so that his access to education isn’t taken up in transportation. In his class are other students unique like himself. There are currently nine students in his class when he attends. He started with five classmates. He has one teacher and an assistant in his classroom at all times. Each classmate requires direct attention for feeding, changing, comforting, moving and teaching. His classmates are nonverbal, just like him. If there is a problem, discomfort or seizure, he and his classmates depend upon the attentive eyes of the adults present. There are only two adults present everyday. Occasionally, there are three adults in the room.
Lucho and his classmates use wheelchairs to move around. Many of his classmates can not propel their own chair. Lucho learns and practices propelling his chair according to his immediate wants. Most often he will impulsively move his chair toward his immediate want. Currently, there are nine wheelchairs in a room with a size of 20’x23′. I asked if there is a limit or ratio of teacher to student for the school district. I was told there is not. This means that as more parents with medically fragile students need to work because there isn’t any other means to provide for their child, they will have to enroll their medically fragile child in school. While I am confident in the teacher and her assistant, who has almost thirty years experience, I have concern about the amount of students who may arrive due to economic circumstances and life as it happens.
When I discussed this with friends and family, my husband didn’t seem at all alarmed. He said, “All they have to do is call 911.” I thought on this. Yes, this is true, but given the development of children and my son’s hyperactivity and easy ability toward boredom, this may cause a problem for him and them.
When I picked him up from school the other day, I was informed that he couldn’t keep his hands to himself. He was pinching others. Oooh, I thought. This isn’t good. It’s not fair to the others because they can’t pull away from him. In a regular classroom, he would receive a time out. He did. In a regular classroom, the other children would have moved away from him or told the teacher. His classmates can’t do this.
I have to ask myself is this is fair to anyone? According to ed.gov:
” An “appropriate” component means that this education must be designed to meet the individual educational needs of the student as determined through appropriate evaluation and placement procedures. However, students with disabilities must be educated with students without disabilities to the maximum extent appropriate.” <https://www2.ed.gov/about/offices/list/ocr/frontpage/pro-students/issues/dis-issue03.html>
I agree with FAPE and its purpose, however, I wish it were clearer by stating a ratio of student to teacher. I fear that the natural events of the economy and legislature changes with Medicaid and Social Security will cause these small units to swell beyond what is appropriate. I fear that my son may express himself, which may or may not be appropriate because he will show his frustration regardless of what is considered appropriate student behavior.
My fear and concern is for my son’s teacher, who is given more and more students on her class roster. A person can only push two wheelchairs in the event of a fire alarm or a lock-down. If one teacher is given nine students in wheelchairs and one or two assistants to help with student care and teaching, how many students will be left without someone to take them to safety? And will the door already be open?
I hope that the school district will open another unit, rather than over-crowd an already existing medically fragile unit. It’s not FAPE and it’s not fair to over-crowd a classroom of medically fragile children who are in different stages of rehabilitation. How will annual growth happen to my child if he doesn’t have the academic and personal stimulation of a teacher to help him grow? I hope the school and the district will seek to be proactive toward a situation that will continue to grow. Legislators have a way of affecting others without realizing. I hope there will be more medically fragile classrooms within this school district so that medically fragile students can obtain FAPE without risk of neglect.
Under Title II, they have a rights to communication in ” related aids and services designed to meet the student’s individual educational needs as adequately as the needs of nondisabled students are met.” <https://www2.ed.gov/about/offices/list/ocr/504faq.html>. While this may mean additional assistants, it should include teachers and communication devices.
I came home after spending a lot of time with my older sons. They wanted to visit the creative lab, which is in the public library, allowing them to utilize various printers and soft wares to expand their imaginations. Wonderful, right? I thought so. After all, I promised my eldest that we would go so that he could print something he developed for a friend and the Mom schedule was over-scheduled as usual. He was reluctantly patient, but patient none-the-less.
Meanwhile, our main bathroom is under construction. I grew up living in a house that was under construction for several months. This remodeling was going rather quickly to my standards. My husband, on the other hand, has never had the experience of living in “limbo”, even though his culture dictates a “vamos a ver” attitude about life and its many decisions. He is so aware of the dust and the dirt and things out of place, that he took it upon himself to go through my things which seemed to be cluttering for him, or that seemed to be an excess for him.
When I came home with my sons, I noticed that the magazine baskets were much smaller than they were before leaving the house. I noticed he decided to clean the kitchen and reorganize the counters. I also noticed that he didn’t seem to think the dishes in the sink could be done to add more “cleanliness” to the house. Instead, I found the dishes still in the sink and he was sitting in the kitchen chatting with the night nurse and my youngest son.
I stuck around to help with some homework my eldest needed to have finished for the morning. My husband fell asleep at the table. He was very tired and I couldn’t help but think he may have over exerted himself. I felt bad for him and told him, “Yes, maybe you should go to sleep.” He quickly went to the bedroom and was never seen again. After many of the same instructions were stated in different ways, Justin went off to the bathroom to take a shower….or so I thought. I continued to help my eldest with his homework, despite the time.
After he finished, he said, ” Thank you , Mommy. Good night.” I hugged and kissed him good night. After everyone was asleep. I went to the recycling can to see if it was true. “No, I thought to myself. He couldn’t have thrown away a large amount of magazines, which are useful, as well as read by others when it comes to recycling. I always take my extra magazines to the library or doctor’s offices to share with others.
I took my flashlight from my purse and walked out to the recycling can to find a full shopping bag of almost every Yoga magazine and Real Simple in the neighbors can. My blood gurgled and boiled, knowing he did this without my knowledge and as a means to lash out because of the reconstruction in the house, which was not controlled by him. He stepped out of bounds and crossed the line. I took every magazine in the can and brought it right back into the house. He did not want to wait for me to recycle them.
My anger was so hot , I almost took his gym bag in place of the magazines he so painstakingly placed in the neighbor’s can because he didn’t want me to notice. He, who devotedly loves his soccer. What if I threw away at lease one soccer ball, or his bag? How would he feel? Unfortunately, I find these thoughts and discussions wasted. They don’t bring meaning to him. It doesn’t match his world. However, if I did throw away something to do with soccer, bakery or restaurant, he would be touched in anger.
I couldn’t forget the night he threw away personal documents because he doesn’t see the purpose in what I’m working on. Or what I might be saving for later. He doesn’t value what I value. This is my life of a martyr. Continue reading
The daily chores continue to rob the time I desire to work for me. I’m not aware that the sneaky ‘needy’ aspects of Mommydom seep into the hidden corners of the day to obligate me into slavery. I realize now, I must put myself first or I will never complete the starts I’ve made over the years. I realize now, the needy aspects of Mommydom will always try to penetrate me if I don’t seek to finish. This doesn’t mean seeking my time after everyone else. It means I must seek to carve out “my work” before everyone and everything else.
I must envision and develop my schedule as if I were leaving the house and going to a job somewhere else. I must realize that I can save more time for “my work” because I won’t have to travel. But I must be serious about “my work”. I must give it value. In order for branding to occur, value must be given. 1Corinthians 13:2, 3, 13; “If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have faith that can move mountains, but have not love, I am nothing. If I give all I possess and surrender my body, but have not love, I gain nothing….And these three remain: faith, hope and love. But the greatest of these is love.”
To love is to respect. Mommydom is a place that often makes me forget to love on myself. I expect others to do it, but that’s not true. My children love me. I know this. But they can’t love on me like I can or did in the past; before them. When my time was more of my time, managed by me, I made choices to spend more time on projects of my doing. I’ve committed to everyone else, except to me. Self-preservation; while extremely important and vital, becomes absolutely necessary in the grand scheme or schedule of a modern woman living in Mommydom. I didn’t think it would come down to this, but I may need to construct a physical schedule with an an active plan of self-preservation written into it until I internalize the nature of it all.
The author lives in the Sunshine state with her three sons, husband and their two dogs, Daisy and Angel. She enjoys creating new and useful items with a crafty flare, while problem-solving new adventures and enjoying every opportunity to be blessed by the abundance of nature and those around her.
Languishing with in the moments.
The angled cut of her white curles told of changing texture and managability. The slight looseness of her cheeks as she studied her reading with serious lips of concentration expressed more gravity than before. Her glasses made her brown eyes larger showing flecks of more hazel than brown. When she looked up from her reading, I saw a contentness-to-be in the moment.
As we drove back from church along the river, we noticed women of all ages out on the house porches and balconies or making their way to the bank to absorb the bright, cheerful, warm sunshine of the Sunday afternoon.
“Oh! What a glorious day!” she cheered.
“Memere. Look at that house there!” shouted Jay from the back seat.
“How wonderful!” she responded. “It’s very big!”
Reminiscent of the long-ago Sunday drives through the neighborhoods of big houses and big yards, green grass and beautiful lawn furniture I enjoyed as a young girl, the oohs and ahhs of another generation could be heard. While Sam slept because the winding of the road was making him woozy, we continued our ooohs and ahhhs, enjoying the designs and expressions of creativity of your own property. Years ago, the same conversation could be heard as I thought about the generations in the car. My boys, her grandsons, miles and miles apart came together to continue strenthening the connection of historical significance that each family strives for itself.
“Weee-eee–eee!” cheered Lou as we sloped over each hill and bump. I felt huge satisfaction as I listened to his expressions of happiness and his participation meant three generations made a stronger connection. We felt as though the many miles which exist didn’t make the distance in today’s daily living so vast. We were enjoying each other’s company. Our interactions made me feel as though there weren’t any distances between us, geographical or generational. Our emotions of happiness to be together surpassed any length of road.
He did it. He made the face that sparks of orneriness and playful obstinance. He made the “O” face, as if to say, “Uh-oh, I’ve been caught so I need to play it up with the hope that no one will be mad”.
I haven’t seen that facial expression in almost four years. Then, he pushed himself back from the table using his feet. He’s ready to go. He wants to move on his own with incredible impact. Any attention he recieves, he smiles with great approval. He’s sensitive now. Traumatic Brain Injuries can feel euphoria and tears in the same moment depending upon what is happening around them and the individual’s support system.
My Lucho is lucky to have his family close at hand to assist him with what he is attempting. Although nonverbal and primarily gestural when he wants something, sign language may become a stronger form of communication for him. His consistent drive to move toward independence reminds me of how strong we need to be when our heart leads us toward our desires. He reminds me to persist and will my actions toward improvement and happiness.
I struggled with our relationship. We knew each other for fifteen years, lived together for six. His family had a staunchness that caused me to be frustrated. I like letting loose. I like to be impulsive. I like to dance. No one in this family danced. I felt an emptiness, an ache within that needed soothing. I looked at the classifieds. An ad read, “Teach in South America”. Ooh. I sense the ache within my being feel stronger. I answered the ad and received an interview.
As I walked to my interview, through the Boston Gardens, toward the Commons and Brownstones, I felt as if I entered the timeless classics, imagining how it was to walk through the crisp trimmed hedges and carefully step over cobble stone walks up the iron wrought steps to tap the brass knocker on the door. A woman in her 60’s greeted me at the door, so pleasant was her disposition and hospitality, I knew I might have a difficult time saying, “No” to her for almost anything.
She brought me down a long dark corridor to a round sitting area with a tv and vcr. I met her friends and colleagues. I was asked some questions about my flexibility, and “open-mindedness”. They showed me a video of the exciting things they do with the children every day and emphasized immersion of the English. “All students leave the school completely bilingual.”
Wow. I thought to myself. Imangine if the tables were turned. Could I learn Spanish in the same way. I was so impressed with the idea that a school existed in another land and their students graduate bilingual. I insisted on knowing more. My boyfriend of several years, with all my frustration was suddenly easier to manage.
“Hello Auntie!” I started. “I’m going to Colombia. It’s only for a year. I’ll be right back.”
“Isn’t that where the drugs come from?”
I countered her comment, “There is more than drugs in country.” I found myself ready to defend a country I didn’t know. The urge was strong. The desire to adventure my way across the globe and leave the staunch to see if I would be happy.
On the plane the anticipation baited me with extreme awareness and excitement to be alive and experiencing a different culture. Something within, the ache, felt at home in the sensual heat of Cali, Colombia.
He invited me to the town of his childhood and birth. I thought what a great way to travel this beautiful country, especially with a native speaker. I was still learning much of the language and already had an embarrassing moment or two. We were dating quite consistently regardless of our language differences. I came to Colombia to learn Spanish by living it because all other methods failed to make it a part of me. Guillermo was one among many eager to learn English. He set himself apart from the others with his piercing dark eyes, heavy but refine arched brow, strong Latin nose and disarming smile.
“Resilient people are not perfect, and they don’t always know what the hell they are doing.” – Angela Duckworth, PhD, psychology professor at University of Pennsylvania.
In my frustration and attempt to manage the barrage of criticism handed to me by my spouse before he left with the preteens for some outside fun and time together, tears flowed down my face and my son’s nurse pittied me. How angry I was. How insulted. How discouraged I’ve become. I’m criticized for my ways and different manner of discipline and parenting. I’m scrutinized for using logical consequences in my child rearing practices.
I’m outnumbered. I am surrounded by the crashing patterns of growing males that continue show they don’t understand what I say or choose not to. The curse? Is this God’s design? No, I won’t believe that.
While there is no nurse to watch my Epileptic son this night, I watch with the vigilence like only a mother can. I won’t give up, regardless of the sleep that tries to take over. Three plus years since that tradgic day and his purpose is clear. For me, he reminds me to rise, to stay strong, and push forward. He reminds me that we can still appreciate each other through smiles and laughter.
When we extend Lucho’s abilities by lifting him on top of his brothers, as if he were ‘king of the mountain’, the giggles of days before return to sooth and comfort the scarring pain that still lays heavy on our beings. I hold onto these moments because they make me stronger. Lucho’s magic is laughter in the midst of anger, frustration and disgust. While my frustration and anger remain within me like a nagging sore, Lucho turns and smiles, almost laughing at the noise of animation and liveliness of the emotions plucked like strings on a guitar, rising and falling in musical dissonance. With his laughter, he has control. He’s like a calming salve on a burn that won’t quit seething. His laughter helps me be resilient.