"Loving the Soul Beneath the Autism" Chapter 23: Becoming an Advocate

Typically as children age, they slowly detach themselves from their parents. Although the father’s and mother’s love never wavers or subsides, the child begins a life of independence based upon their own choices. However, for the portion of parents raising a child with special needs, life may function in a different manner. Some special needs children may, in fact, follow in the same slow detachment process of typical children. However, based upon the pliability of their needs, others may need their parents’ care their entire life. As for our son’s needs, we felt blessed when we were told early on that it was up to us as to the degree in which we could guide our child to function out on his own within the world.

It was indeed up to us to decide if we wanted to take the time and the commitment to guide our child through every life stage, sensitivity, and behavior, or if we wanted to ignore his quirks and just let him be him, by allowing him to act in whatever way that felt right to him at the given moment, as long as he wasn’t embarrassing us. While knowing that the path we chose may have been inconvenient to the life we selfishly wished to lead, we could not find one superior reason why we should not give all of our time to help our son function to his potential.

I had much work to do with our families, acquaintances, and the world around us to become an advocate for child we were raising. I can admit that the fight did not come easy for me. As a very soft-spoken individual myself, I knew it was not going to be an easy task. I never wanted to upset any one, and in the heat of the moment, my mind always failed me. The words I wished to state barely ever escaped my mouth in the correct order. Although, it was something that needed to be done so that my son would not get bypassed. Though as a result of my own hindrances, there I was pushing my way into a brand new reality, and I felt I was being swallowed up. I knew I had to find the words to explain why I believed that our child, if given the right guidance and environment on a daily basis, could succeed in the social world. My mind willed me to develop that fight but fought with my lips as I struggled to produce the words to explain my thoughts in a manner that would not be offensive to others. With my determination and understanding, I slowly mustered the strength that I thought I initially lacked to be Gracin’s best supporter without losing control of the situation.

It did require an incredible amount of time and energy, but it was not nearly as difficult as what I have found pregnancy to be. This, in turn, led me to believe that if a woman can endure pregnancy, labor, and delivery, her body and mind is already fully prepped for whatever lies ahead in the life of her child. I believe we can conquer anything for that baby who initially lies so peacefully in our arms. We just have to keep our mind and heart in the correct place while fighting for what that child deserves. It is okay to fall to pieces at home, but when fighting for the care of a child in a school setting, bring out the lawyer from the back corner of your mind to keep pushing every angle until your will is accomplished.

Within our own lives, by the time Gracin’s fifth birthday arrived, we were only nine months away from his first day of kindergarten, and I knew we had to start preparing him for a classroom setting. Since Gracin did not desire toys for his birthday, he was basically given an office supply party to celebrate his special occasion. He asked for things like scissors, lined paper, math workbooks, word searches, and the like. He was thrilled opening all of his presents and finding these items, even more thrilled than a child getting a bike. So with our new arsenal of school supplies stocked, we began to imitate a school setting in our dining room. Each day I began to make sure he understood how to raise his hand, walk in a line, and wait his turn. He also had specified periods that I had him do his math, reading, and writing just like class periods.

In the spring, Gracin began the process of transitioning out of the early intervention. Gracin, myself, the IU physiologist, and a school psychologist from the district that our son would be attending met together in a transition meeting to discuss the ways in which we could expect life to change with the beginning of school. We discussed the services they suggested once he entered into school, and we were even given the opportunity to have those services extend into our home if need be. We discussed all of Gracin’s needs and concerns, and a transitional plan was written for the school to begin with before their own individualized education plan was set up.

Leaving the meeting, I felt like we were extremely prepared for our next life stage. Within a month, we went for the first time into the school building for kindergarten registration. He met with various individuals who tested different sets of abilities, and Gracin excelled at every test. The one teacher who assessed his reading level even came up to me personally after the test to state that she was amazed by his reading level as he could read words effortlessly that most second graders would have some trouble attempting to sound out. Within the following few days, I emailed and called the head of the special education department and also the principal at the school to request testing of Gracin’s abilities to ensure proper placement.

After two months of feeling as if I was battling in a one-sided fight against the school system, a psychologist from the school finally agreed to meet with us to perform a placement-type test that would assess his abilities. The morning of the test, Gracin was so excited to be back in the school building that he could not contain himself as he bounced with joy in his chair in the waiting room. After bombarding the secretary with questions, the psychologist called him into the office. Looking deeply into Gracin’s eyes, I asked him to respect his words though I could see a loss of control beginning. Gracin turned midsentence and skipped excitedly behind the psychologist as the bulletproof door closed behind them both before I even had the opportunity to ask any questions. Sitting down and feeling defeated, I immediately experienced a sense of failure for not insisting that I accompany him to the test to monitor his behavior. In the back of my mind, I knew he was not prepared to control himself in an unfamiliar environment.

After only forty two minutes of a potentially two hour test, they both emerged from the long hallway, and my heart fell into pieces as I witnessed the look of overstimulation in Gracin’s eyes. The psychologist seemed abnormally tense as he explained that Gracin honestly could not be controlled throughout the test. The only questions he could get him to answer were the verbal ones because he was too busy climbing on the tables and chairs while attempting to look out the window. Because the psychologist was not allowed to physically move him into a sitting position, he was not able to test his full abilities. Hearing the report, while my little boy was attempting to pull me around the room, I felt as if my heart sank into my stomach.

All the preparations we had done would be useless unless we could get Gracin to understand how to behave in a classroom setting without constant monitoring. It felt we were already in over our heads. Leaving the office that day, I was only somewhat disappointed in my son, but I was mostly disappointed in myself. I worried that by my not vocalizing his needs, Gracin’s potential could not be seen. Gracin was not prepared to know how to function in a room he had never seen with a complete stranger. It was my fault for not realizing that before the testing. I lacked the strength to stand up and say what was on my mind because I did not want to feel a potential rejection. That was my fault in its entirety; although, that all changed over the next month as I found my voice for my child.

Six weeks before school was projected to start, we received an unexpected phone call from the special needs teacher at his school. She answered every question I had. I expressed to her my fears about the kind of teacher that he would need, and she assured me that he would be placed in a classroom with a teacher who could handle his needs and encourage his abilities. She was extremely nice and gave me such hope for the impending start of the school year. Hanging up the phone, I felt such peace come over my body for his first year in school. I just prayed that her superiors would not deny her requests. However, after feeling a sense of relief for a few weeks, we received the results of the intellectual test and were disappointed with the results. Given his behavior level, Gracin’s reading and math abilities did not show. In fact, they were barely consistent with children of his same age. Although, it was noted that the psychologist did not feel this test showed his full intellectual abilities. Within the same week, we received another call from the special needs teacher, which added to our sadness. Almost all of her requests were denied other than being allowed to ride a special needs mini bus.

We started to feel extremely discouraged. As time passed in the wait for our final IEP meeting, I knew I had to explain that at home we had a brilliant little boy who enjoyed doing multiplication and division problems for fun, reading chapter books at a second grade level, and expressing himself by making little things, which he called art, out of scraps of paper. He thrived on school work, but I had no idea how to get the right people to see his abilities. I was unbelievably frustrated on all fronts, but I knew that this IEP meeting held the chance to advocate for our son in the ways in which I always had felt I lacked.

I had less than three weeks to prepare and prepare I did. I wrote all of my thoughts out on paper into concise responses to most questions that I imagined may be asked of me so I would not feel overwhelmed by the pressure of the situation. I took videos of Gracin doing math problems and reading his chapter books. On the day of the meeting, I brought it all along in a backpack that was crammed full of books that he had recently read, the completed math books, and the videos on my camera showing the same. Walking into the room, I felt like a college student again armed with all of my materials.

We made more strides in that IEP meeting than I could have imagined. Even though he could not be placed into a gifted program, with a little bit of persuading on our part, my husband and I made our argument why we felt skipping a grade would only benefit our son. We explained that since he was already doing more advanced math and reading, by sticking him in a classroom with children just learning the fundamentals of those subjects, we believed it would only lead him to act out behaviorally. I explained that in a more structured setting with formal desks and higher expectations, Gracin would come to know that school is serious from day one. I added that his behavior mattered more to me than his education at this point in his life, and I was willing to help as much as I could in aiding his teacher because we wanted him to start out on the best path for his school success. After providing our argument to the special needs teacher, the head of the Special Education department, the head psychologist for the district, and the assistant principal for the primary school, we all agreed that placing Gracin directly into the 1st grade program was the best course of action. My husband and I were elated with joy as we left the meeting knowing we had done right by our son. By writing down our feelings, not getting caught up in our own emotions, stating the main points in an organized and concise manner, combined with the videos and proof, we became the advocate that our son needed.

The months of worrying and fighting for what we believed was best for our child vanished as I watched my little boy excitedly wait for his bus to drive down the street. His eyes were filled with wonder while I watched him excitedly begin to enter into his new world, a new world of being without his mom for eight hours a day. Even so, questions exploded in my mind during that first fall day as his bus began to slow at our driveway.

These questions engulfed my mind as I watched him let go of both of his brothers’ hands while his Daddy’s hand gently held him back from running in the street when he first saw the bus turn towards us. Did we prepare him enough? Would he be able to make it through a full day of school? Would he listen? Could he control his body? Could he… Turning with only one foot on the first step of the bus he ran back to me with an excited smile in his eyes to give me one final hug and his brand new baby sister a kiss.

Smiling happily, with the sweetest moment frozen in time in my heart, I watched as he had not one ounce of fear in his body. He bravely placed his tiny foot on that big boy special needs school bus. He wore his favorite green t-shirt with green and white plaid shorts, a lanyard with his name around his neck, and his new green sneakers. Gracin greeted the bus driver with his typical slew of questions before he was interrupted to turn around for a final picture and was guided to his seat by his bus aide while he and his brothers’ waved with all of their might at each other. In that moment, I was pleased with the life that I possessed. Even though it had been an amazing and difficult journey, we had completed one portion and had now begun to embark on a brand new journey starting with a memorable day of the next chapter of his life.

Less than eight hours later, my bouncy happy big boy came bounding off the bus into his daddy’s arms with so much happiness it surrounded his entire persona. He could not stop talking about his day, his new teacher, all of the exciting things that happened to him, and the list just went on. I was amazed that I did not receive a phone call about his behavior on the first day, but I was ever so thankful.

Over the next few months, we were very appreciative for his teacher. She was a wonderful mix of firm and loving for him, and she started a lifelong presence of how to act in a school-type setting in his mind. She had a way with him that I do feel I know how to express in depth enough. He listened and respected her when she caught him doing something wrong. Quite honestly, she was even able to let him be himself without disrupting the other children. Slowly but firmly she guided him into what she needed while he grew immensely. As a result, he was still able to keep his happy and positive viewpoint, and we were eternally thankful for her beginning presence in his young life.

He was in school only three short months before turning six. Within those few months, we were privileged to witness exactly what we had hoped could happen with the start of his schooling. He only visited the special needs room for a few moments each day. He was excelling without much extra instruction, and his bi-weekly school therapy was in the process of ending because of how well he was responding without guidance during the school day. He had even made his first true friend. He was always so excited to begin his school day, and he was never at a loss for words in describing all of the fun things he got to do throughout his day. Honestly, I could not have wished for a better outcome, and aside from some usual imitating of others’ bad behaviors, initially we did not have much trouble in those months.

Although I had struggled about which type of schooling to choose for my son, I am grateful that we initially started in the public school system. It was not an easy decision by any means given our religious viewpoints on the schooling system. In the end, because of the services that could be at his disposal in a public school setting, we had to start out with their program. With all of our heart, we wanted Gracin in a private school setting, but we had to start somewhere. I would rather see him excel and eventually be put in a private school than feel disappointed in the opposite if he could not adapt. On his sixth year birthday, marking the close of a long journey from the development from infant to school age child, I feel as if we had proved our worth as parents. We were starting to raise a child with a deep rooted moral system who is well disciplined and radiates a love for others that is beyond measure. I can stand proud and very hopeful for all our son’s future endeavors and successes as he begins to leave his unique mark on the world.

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Copyright 2020 Janele Hoerner