1. a small piece of paper, fabric, plastic, or similar material attached to an object and giving information about it.
Many parents fear the “label”. They do not want their child to be seen as a word on paper like dyslexic, specific learning disabled, ADHD, executive function disordered, autistic, bipolar…. This label is embarrassing to some, heartbreaking to others, and creates stabs of guilt that it is probably your fault. Guess what??? THIS IS NOT ABOUT YOU!
This is about your child. It is giving information about how they learn, how they thrive, how they make sense of school, and what makes their learning different. As a society, we spend so much time honoring the differences in people’s ethnicity, gender, sexual orientation, and religion. Yet, some parents try to hide the very differences that make their child special and unique.
As an educator and parent of two amazingly special children, I am here to tell you to get over yourself. You created this wonderful human being, unlike any other, and you want to hide their differences. The answer to your fears and struggles is simple. It’s car keys.
What? Yes, car keys. Think of your darling child as a car. A hybrid made from your very own DNA. They are unlike any other. There is one key that starts their car. One key that ignites their desire and ability to learn. One key that allows their engine to fire. Why would you not give their teacher the key to start your child’s car? If you hide your child’s difference or refuse to seek an evaluation to figure out why they are struggling, you are hiding that key. You are wasting a year of learning that could be taking place. You are basically handing the teacher a key ring full of keys and saying, “Good luck. Hope you find the right one!”
Teachers love their students. Okay, maybe not all teachers, but I do and my friends do too! We want to help your child. We want to help them see success as attainable. We do NOT want to tear them down and make them feel like failures. So, when a teacher suggests that there is something concerning or confusing about they way your child is developing, listen to them. Please do not take it as a finger pointing that you have not done your job. Teachers are not neuropsychologists able to see into your sweet child’s brain and pinpoint why they are not focused, able to decode a word, or remember the three little things she/he asked them to do.
They are actually just as worried as you parents. They worry they let you down by not figuring out how to help your child learn. This is one hard part of my job as the coordinator of a resource program in a private school. I need the teachers to be honest with you. They are often afraid to burst your bubble of pride by saying your child is struggling. It is truly important to find the learning differences and remediate as soon as possible. Your child’s mental cement is still wet in their early years. It can be molded and supported in the manner they need. Do not wait to help mold them because feeling like a failure and dumb is one of the hardest mindsets to overcome.
Please consider finding the key to start your child’s car and giving that key to their teacher. Do not waste another year making the teacher figure out how your child learns. Start your child’s engine and watch them speed along the road of learning. There will still be speed bumps and traffic, but you will have given your child the chance to navigate their learning. Actually, they will be learning to navigate the rest of their life.
[ kən trṓl ]
1. manage: to exercise power or authority over something
2. restrain or limit something: to limit or restrict somebody or something
My summer before college was once again filled with new beginnings. We moved into a handsome buttercup yellow house with a sprawling front porch in Morris Plains, New Jersey. The lush trees arching over the endless streets and the rolling hills were like a dream. I had never lived in such a beautiful fairy tale type place. Once again, I prayed that this would be the place of happiness for me.
The first months of college were surreal. I made friends, ate healthy, exercised, and enjoyed my nickname, Arizona Jen. This time was filled with so many new experiences: sorority sister trips to Manhattan, the Jersey shore and big Italian families. I would joke that I was the only non-Italian, non-Catholic student at Seton Hall. In my mind though, I started to notice there were many other qualities that set me apart.
My dad lost his job the same week I started college. The very job that had moved us across the entire country. The job that had changed my plans to attend college in Arizona. The job that payed for the house in New Jersey and the tuition for Seton Hall. My parents did not want me to quit school, despite my offer. The house was sold, my dad moved back to Phoenix for work, my mom stayed in a tiny apartment in Jersey with my two cats, and worked at a furniture store. There I was at college using up the money they were sacrificing for me to be happy.
My confidence began to spiral with guilt. This guilt lead to me feeling powerless over my future. I searched for something that gave me control. Food became that substance. I could control what went in and out of my body.
I would eat secretly in my dorm room and then vomit. This way, I could punish myself for not being perfect. Mean girls, bad grades, fears, moving, and not belonging all disappeared when I was in the midst of stuffing in food. Then the discomfort would be so great, that I had to get rid of what filled my stomach. After purging, I would loathe myself for what I had done. Each time, I prayed that tomorrow would be better. I would be healthy and happy. The thing that kept me hooked in this spiral was that it occupied my thoughts. It gave my mind an hour break from the insanity.
Lying became second nature for me. I had to hide what I ate and where I went after eating. This contradicted everything I was ever taught, but I felt that I had to. The binging and purging had become too demanding. I could not stop. Each moment in my day was consumed with thoughts of food, exercise, and how I needed to fix myself. It drove my every action and conversation. Soon, I became unable to maintain most of my friendships.
My freshman year of college finally came to an end. I needed a new start. A new start would make me healthy and happy again. My parents had already moved back to Arizona. God did give me a couple of friends that stuck with me despite my sickness. Perhaps they did not know about it, or maybe they liked me in spite of it. I am thankful these sorority sisters were the people that saw the good in me through the fog. They deserved a full time friend. I was not capable of being one.
After summer, I was very excited to start at the University of Arizona as I had originally planned. My high school friends had made new friends, pledged different sororities, and started new social groups without me. That was totally to be expected. Their lives were full and busy. I was happy for them, but sad we would not pick up where we left off in high school. So, sophomore year turned out to be much like the last.
I was in self-destruct mode. To make things worse, I started to control food by restricting my eating and using laxatives. I could live on bran flakes with water for breakfast and a frozen yogurt for lunch. But, that did not always feed my need to get the sickness out of my mind. I was trying hard not to throw up anymore. My mouth had sores in it, and my stomach ached all the time. I was always constipated and bloated. Laxatives seemed to be a good alternative. I figured that if I took a couple, my body would be purged of all the bad things. I would not have to throw up any more.
This seemed to be a good idea to me. I thought I would get better. Unfortunately, I did not. My body became more and more resistant to the laxatives, so I had to take more. Two laxative pills turned into ten, then twenty, thirty and more. I had to shop at different stores to keep people from noticing my disgusting habit. The large numbers of pills I was taking would keep me up at night, cause me to vomit, dehydrate, pass out, and miss out on activities because I had to be close to a bathroom.
My inability to manage my eating disorder culminated one night in the spring of my sophomore year. I felt I needed to take sixty laxatives in hopes that it would clean out all of my bad habits and thoughts. If it worked, the next day I would awaken to a new me and fresh start! Obviously, it did not work. My roommates had to take me to the university’s urgent care. I needed several bags of IV fluid to survive. At the end of the day, I was transported to the hospital, for what I thought was more IV. It turned out to be more than an IV. I was admitted to the psychiatric ward under the label of a suicide attempt. I did not think I was trying to end my life, just end all of the bad thoughts and habits. That is what I kept telling the doctors and nurses.
This place was awful! They took what few things I had away from me like my pencils, pens, shoe laces, and more. I had to sleep in a room with no door, next to a woman who cried out to non-existent people. Each morsel of food I did or did not eat was monitored. There were group therapy sessions and leather lacing. The lacing was not just a fun art activity. I think it was supposed to occupy my mind so that I could talk about my problems.
My parents called on the pay phone in the hallway soon after I was sent to the ward. They responded in opposite manners. My dad said he loved me, but did not understand. My mom was angry that I hid this from her and not asked for help. In my attempt to be the perfect daughter, I could have left my parents with no children. They must have been devastated. Cancer took my sister, and I was trying to end the life that God let me keep.
Lord, I am so ashamed by my disrespect for the body you gave me. This body is a temple. You made it specifically for me. You loved me so much that you even numbered the hairs on my head. Yet, I tortured and loathed it. Please forgive me. Let my future days be filled with honor and care for the gift of life you have given.
human (adj) having human form or attributes as opposed to those of animals or divine beings
Today, Piper and I walked at the train park to get her exercise before it was too hot. As I helped Piper meander up the play structure, a little girl looked at her, ran to her mom, and asked loudly, “Is it human?” This was a question I had never heard before. It took me off guard. As a parent of a child challenged with special needs, you learn to arm yourself with shields. Shields to deflect the stares or looks of pity. Shields to only hear the positive and drown out the words of people being thankful they have a “normal” child. Shields to stop the pain that pricks your heart each time you realize that life is harder and different for your child.
So after I put up my shields and quickly diverted Piper away from the area, I started to chuckle. This little girl had seen Piper’s enormous AFO’s (braces) that help her to walk steady, and focused on the metal and plastic. She could not see the inquisitive human girl inside. This is probably because there are currently many kid movies about robots living life like humans. She wondered if I walked my robot to the park!
I am blessed that my Piper is in human form. Some of that form is flawed and works slowly. But she has never known life to be different. Her struggle has always existed, and she has had to rely on her “robotic” aides to function. If we are honest with ourselves, we could realize that we are all in a flawed human form. We just put up our shields to hide the flaws, divert attention, and hear only what makes us feel good.
He has made many parts for our bodies and has put each part just where he wants it. What a strange thing a body would be if it had only one part! So he has made many parts, but still there is only one body. 1Corinthians 18-20
God picked each part of Piper when he was forming her. He picked each part of you when he was forming you. There is a reason we are all here. We each have a part or role that God plans us to play in the lives of others.
Currently, my back and arm parts give me the strength to assist Piper with her mobility. My brain part gives me the ability to help my struggling learners learn. My heart part helps me to understand the struggle some parents face and equip them with knowledge to help their struggling child. If I do not take down my shields, these God given gifts will be unused.
Perhaps, the little girl was able to glimpse the honest, flawed, intricate design Piper has from her divine being/creator. In the absence of a shield, she may have wondered if Piper could be a human.
Lord, please help me to embrace my flaws and not hide behind shields. I know there will be hurt and anger at times. Allow me to use those to become the person you created me to be. Amen.
move [moov ] 1. change position: to change position or location, or change the position or location of something 2. change residence, job, or school: to change your place of residence, work, or study, or make somebody do this
My freshman year of high school, my dad’s boss let him go for spending too much time away from work during my sister’s illness. He was able to get a job in Arizona, my mom was seriously grieving, and I was somewhere in limbo. The “sand” continued to rub as I placed pressure on myself to do everything perfectly. I was my parents’ only child now. The only one to do things right. There was no one to come along behind me and do better. My sister was gone.
In the middle of my sophomore year, my mother and I joined my dad in Phoenix. I did not want to move to the desert at all. It was made worse, because I did not like high school. Actually, school in general was not my favorite. I did well, but had to study more than the rest of my friends. The compulsion to not mess up continued. I wanted to be perfect. Every time that I did not measure up to my standards, I felt beaten and worthless. It also did not help that I spoke with a southern accent. It was something that drew attention to me and made me sound ignorant.
At my new school, there was a flier posted about pom line auditions. This was much like a spirit line or dance team. My parents thought it would be a good way for me to make friends. We had taken dance classes before Amanda got sick. She and I loved to make up dances. It was those joyful memories that prodded me to try out. My confidence waivered when I saw the beautiful girls at the try out clinics. I feared being laughed at again. God’s crazy plan allowed me to make the pom line. There were twelve girls that danced and cheered at all of the football and basketball games. Many times were spent fooling around on the sidelines of games, practicing, and being busy all of the time. This saved me in high school from becoming lost or turning into a recluse.
My image of myself started to become an obsession. I wanted to be the smartest, prettiest, funniest, and most liked. The real me began to disappear under these pressures. My actions caused me to lose friends and hurt feelings. All of my efforts to fit in, caused me to not really fit in at all. The fragmented thoughts in my mind began to chip away at the real Jennifer. If I could go back to high school and be the real me, I would.
Toward the end of high school, my father took a job in New Jersey. My mom stayed in Phoenix with me until I graduated. I had already been accepted to the University of Arizona and had my dorm assignment. Many of my classmates also planned to go to Tucson for college. The potential to start a new chapter in my life was exciting. I hoped that it would be a time for me to develop deep friendships with those God placed in my life and actually feel like I belonged.
Fears began to creep up that I would be “left” on the west side of the country all alone. If I needed help, there would be no one to come to my rescue. My parents were all that connected me to life, so I decided to head for New Jersey with my parents. I declined my admission to the University of Arizona, and decided I would attend a college in New Jersey. Which university, I had not a clue.
The weekend after graduation, we loaded up the car and drove to New Jersey. This was far from the fabulous graduation trip that my classmates were having in Mexico. However, it was a memorable trip for us. We were in another state with another new address. It was our seventh state to live in, and I am not sure how many different apartments, condos, and houses we have lived total. All of the friends I had while living in Georgia had become a distant memory. It was too hard to send another “We’ve Moved” letter. This is another area that I should have been more diligent about. There were friends that I wish I had not let go.
My world kept changing so quickly. It seemed that as soon as my feet were planted, they slipped. My need to be in control started to consume me. I was not able to control where we lived, where I went to school, that I felt lonely, or afraid. My ability to make friends and keep them was poor. I had no long term friendships for me to learn from. I had become an only child when Amanda died. Siblings teach people how to relate and share with their peers. My understanding of my role in life was shaky. At that moment, I found a crutch that almost destroyed me. The one thing I could have control over was food. This was the beginning of an eating disorder that peppered my life for many years to come.
Lord forgive me. I did not know that my choices were going to affect so many people. You gave me many gifts that I hated and tried to change. I was made in your image, yet I tried to change that image. Forgive me for turning to food rather than you.
sand [ sand ] 1. material made of tiny grains: a substance consisting of fine loose grains of rock or minerals, usually quartz fragments, found on beaches, in deserts, and in soil, sometimes used as a building material
My beginning was in 1972 and not my own for long. A sister came into the picture four years later. She was a spit-fire named Amanda. We grew up in Georgia with magnolia trees, humidity, and church. It seems like as long as I can remember, we were at church. Church on Sunday mornings, Sunday nights, Monday nights, Wednesday nights, and even Saturdays. This was our own safe world. I grew up knowing that God made me and loved me. My entire life I have never questioned that. I have questioned the path he chose for me, but not that I am his child. I thank my parents for raising me with faith and the ability to call on God at any moment.
Even though I had this understanding, my life was not perfect. There were always tiny grains of self-doubt. I often felt like an outsider. I tried to fade into the background in social situations, because I was an easy target to tease.
The summer before my seventh grade year, we moved to a rural suburb of Atlanta. My parents planned for us to transition from private school to public. This was culture shock for me. I knew almost no secular music, had always worn uniforms or dresses to school, and most of my class sizes had been less than fifteen.
I think I cried almost every day of my seventh grade year. The kids had all been together since kindergarten, and I did not look like a typical southern girl. Summer time had been filled with days at the pool and no sunscreen. I inherited the ability to become extremely tan from my Hungarian grandmother, so I started a new school looking quite brown. My eyes are dark brown and my dark hair had a fresh, stylish perm. So, I think the kids were not quite sure which group I should fit in to. The white kids thought I was black. The black kids thought I might be bi-racial but pretended not to be. It was 1985 in rural Georgia, so there were hightened racial tensions.
As the school year progressed, I made some friends and joined the Drama Club. The middle school plays allowed me to belong to a group, but it also gave others more ammuntion to tease me. Some of these incidents are still tucked away in the recesses of my mind. In the hallway one day, a group of girls put a price sticker on my back. One of them poked me and said, “Twenty-five cents? I wouldn’t pay twenty-five cents for you!” In class one day a boy told me I was the ugliest girl in the whole school. Another girl put a sign on my back that read, “Kick me, I am chunkarian!” I think she couldn’t spell Hungarian. Maybe all middle schoolers experience this kind of teasing. I pray that many do not.
My sister never encountered this. She was beautiful and funny. We could walk into any store and the clerks would notice her immediately. People were drawn to her. I regret that I was jealous. At that time I did not realize that I had many more years to command attention. Amanda did not.
Amanda was 10 years old when she went to Heaven. It had been a little over a year after she was diagnosed with a malignant brain tumor. That year was full of hospital stays for her and my parents. Our lives were turned upside down. No longer were we concerned with dance classes or slumber parties. It was all about chemotherapy appointments and blood cell counts. I watched my vibrant sister swell from steroids, scream in agony if anyone touched her, and then become excruciatingly thin. She looked like a little old man. We used to put on plays, dress up, giggle, swim, and play. My sister was fading, and nothing I said or did could bring her back.
My parents chose to bring her home when the doctors told them the cancer had spread. Amanda was in a hospital bed in the front room attached to an IV. Nurses would come to check on her daily. My parents, grandparents, and family friends would be at her bedside daily to pray and read her scriptures. She began to hallucinate from the medicine. She spoke of opening the door to let Jesus in and angels surrounding us. It was always apparent that she was a special child of God. Her heart was to pray for others before herself. She was amazingly strong. In her short ten years, she did more to bring others to the Lord than most of us will in our entire lives.
I was there when she took her last breath. It all happened so fast. She would gasp and then moments would pass before another gasp. Eventually, they ceased. The doctor came to pronounce her dead. The funeral home came to take her body. I was angered that they covered her with a sheet before she even left our house. My chance to say goodbye was gone. It was very surreal for me as a 14 year old. My heart was breaking, but I needed to be strong for my parents. I did not want to make them sadder. Why had God let Amanda die and not me?
Her funeral was called a celebration. It was filled with music and words of encouragement. One of the songs was “Angels all Around Me” by the Bill Gaither Trio.
The lyrics seemed so true. She always knew that she was surrounded with God’s love. Amanda was no longer in pain, had gone to be with Jesus, and was in a place where she could dance and twirl. My truth was that I was left on earth with no sister and alone. It was bizarre to see the faces of people in agony, streaming with tears. Why couldn’t I cry? Did that make me a bad person? It was just so strange to see a lifeless body in the casket. The feel of her waxy skin made me realize that the body was not my sister. It was only a shell. A shell that had housed her spirit. My ability to understand life and death started at that moment. God let me see that our bodies are only temporary. Our souls live eternally with Him.
I seemed to watch through a fog as the next months progressed. My freshman year of high school began and the kids at school were unsure of what to say to me. I could hear them whisper about my sister dying that summer, but most did not offer their sympathy. If they had, it would have been to say, “I am sorry.” To which I would probably have replied, “Why? You didn’t kill her.” Not a very nice reply, but it was my way of dealing with hidden pain. It took many years for me to be able to summarize my thoughts and feelings. I was angry deep down.
Lord, I miss Amanda every day. I wish she could have been at my wedding, at the birth of my children, and there to answer a phone call. We had conversations that never took place and games we never played. Sisters are supposed to be there for one another. I could not protect her from cancer. My life with her was too short. I wanted more time.
In the 13 years of my daughter’s life, she has never spoken a word. Not one single word
Words [wûrdz] A sound or a combination of sounds, or its representation in writing or printing that symbolizes and communicates a meaning
People often ask me how we communicate with Piper. It is difficult to explain. She has no words, but will make high pitched squeals or short vowel sounds. Sometimes, it can sound like she is saying, “yeah” or “uh-uh”. Her facial expressions and tone of sound or cry can communicate her needs.
When Piper was younger, we tried to teach her sign language. She did not consistently understand the differences in each sign, so when asking for what she wanted, it was like watching the coach in a baseball game with arms waving, tummy patting, ear pulling, clapping, and chaos. She became very frustrated with us! Why could we not understand what she wanted?
Next we tried to give her “words” with picture cards and had her point to what she wanted. Piper became proficient at pointing to what she wanted and very good at pushing away the picture or item that she did not. Then the iPad came into our life. We loaded it with a communication program that we are slowly working to utilize on a daily basis. Piper will use it to request a certain food, tell me she “needs a break”, or let us know that she wants to go to school. The struggle is in her lack of motivation. She will use it to communicate if prompted, but not in a reliable manner. I often wonder if she finds it easier for us to anticipate her every need rather than struggle to translate thoughts into the push of a button.
It is quite an eye opener when you ask people to communicate without words. They struggle to make themselves heard when there is silence. Yet, their body language and facial expressions are so telling. We take for granted that we have a voice. We take for granted that we have words. We have the ability to choose positive or negative words, kind or hurtful words, uplifting or cutting words.
“A word of encouragement heals the one who receives it, but a deceitful word breaks the spirit.” Proverbs 15:4 The Voice
Perhaps God’s plan in blessing me with Piper is that I learn the truth about words. My girl has no words, but seems totally content in life and feels love. Why do I put my self-worth in approving words from others? Why do I seek words of affirmation to prove that I am worthy? My Holy Yoga journey is one of finding the quiet. I am working to find peace in myself and knowledge deep down in my soul that He loves me. God knows I am worthy. I will not have the right words or ability to speak life into others until I fully rely on my Lord. It’s time to shut my mouth and listen.
Lord, I am seeking to hear your words and plan for my life. My flesh focuses on my desire to hear Piper say a word or tell me that she loves me. Her life is a pure example of how I should live my life. I want to have happiness and joy because I have your Truth within as my foundation. Help me to grow. Amen.