by Dustin Phillips

Introduction 

Hello. My name is Dustin Phillips, and I am a 6th grade Collaborative Education teacher. I am inspired by my older brother Chad to be an advocate for all individuals with exceptional learning needs. There are many different lessons that I have learned throughout my life that have ignited my passion for being an advocate for individuals with exceptional needs. Growing up alongside Chad, who has an intellectual disability, has helped prepare me for my career as an educator. As a sibling of an individual with an exceptionality, my on-the-job training began when I was five years old. Throughout my childhood, and even into my young adult life, I have learned to pay attention to detail, be patient, compassionate, empathetic, and have the ability to connect with a diverse population.

I chose my degree so I may be a better advocate for individuals like my brother, and I want to provide students within our community the equal opportunities they deserve to receive a quality and equitable education. My goal is to provide an opportunity for these individuals to enhance their academic career, but also receive workforce development training, social interactions, and to become more self-aware about their individual rights.

Who Is Chad? 

Chadwick Alan Phillips is a twenty-eight-year-old man who inspires me each day. Chad has Down Syndrome which is usually caused by an error in cell division called “nondisjunction.” In simple terms, Chad has three copies of chromosome 21, therefore, you may hear Down Syndrome referred to as Trisomy 21.

Chad has many physical characteristics like many others with Down Syndrome. He is four foot, nine inches tall and approximately one hundred and forty pounds. He is white as Casper The Friendly Ghost, with slanted eyes and low cut ears. Chad keeps his head at a close shave, and hardly ever lets his beard grow out. In all honesty, Chad looks like a 12-year-old boy, and that is surprising since many with Down Syndrome seem to age quicker.

Chad recently just received hearing aids, and his speech is improving. He loves Elvis, Rocky, playing the drums, and any type of wrestling show. I can assure you it is never a dull moment in our home.

However, beyond all of these physical characteristics of Chad there is so much more to learn. Chad is thoughtful, kind, loving, passionate, sometimes aggravating, but a major blessing to have in your life. Everywhere he goes, I promise a smile will come across your face. He loves to dance for crowds, give high-fives, and he definitely is a ladies’ man.

Chad’s Testimony 

On November the 19th, 1991, Chadwick Alan Phillips blessed this earth with his presence, about a month early, too. However, not everyone has always thought of it that way. My parents, Howard and Misty Phillips, were young parents. When Chad was born, they were just sixteen years old, in high school, and not married. The odds were already stacked against them from the beginning. Then, at ECM hospital in Florence, Alabama, my mom was given the news that her son was a “mongoloid”. The outdated terminology, the lack of emotion, the carelessness of their words just bellowed out and shows how out of touch people were back then. My mom was interrogated as if she were the reason Chad was different. “Did you drink during your pregnancy? Did you do any drugs? What did you do to cause this?” All of these questions were asked, then just to tell her that her son would not live through the night. Imagine the trauma on a young mother that could cause. Immediately, Chad was med-flighted to Birmingham, where he would be cared for at Children’s Hospital. My father then had to make the decision, “Do I stay with the mother of my child, or do I go and be with my child?”

When Chad arrived, he was the healthiest baby in the unit, and thankfully, he was able to come home after two weeks. However, the doctors in Florence were ill-equipped to serve him or my parents. The physician told my mother immediately that although he lived, he would not amount to much and he would never be able to walk, talk, or function on his own. He encouraged her to make alternate arrangements for what little he had left of this life.

Both of my parents dropped out of school to support their family, and my mother was kicked out of her home because of her pregnancy. Chad was a sick baby; therefore, my mom spent the majority of her time caring for him as my father worked to make ends meet. They speak about how difficult it was, how poor they were, and they often reflect on the road they traveled.

Chad in School

Fast forward several years to where I am alive and Chad and I both are in school. Chad and I attended the same public school; however, I was in kindergarten, and Chad was in a self-contained special education classroom for fourth grade. It was 2001, and we all know that year was a mess. Back in 2001, inclusion was not common like it is today. Therefore, students in self-contained classrooms truly were isolated. They may not have been segregated to a different school, but they definitely were segregated from the rest of their typically developing peers.

My mom and dad, still young, missed a lot of the signs in Chad’s childhood. Chad was nonverbal at this time. The school district he was in was not consistent with the services they should have been giving him. Chad would cry every day not wanting to go to school, he would put up a fight, and just have complete outbursts. He was THE behavior kid that had a behavior plan, but it only happened at school. The special education teacher that year was in her first year of teaching, and she is one of the many reasons why I chose my career. I never saw her teach nor do I ever care to, but it was everything that she didn’t do that motivated me to be a teacher. She was terrified of her veteran paraprofessional. The central office had even told my mother that the paraprofessional was crazy, but could not get rid of her because of tenure.

The paraprofessional was in her sixties, mean as a snake, and very unprofessional. She would often greet my mother at her car, and reveal information that only the special education teacher is allowed to know per the Family Education Rights and Privacy Act. She would mention to my mother that she needed to give her consent to paddle Chad because of how “awful” of a kid he was. Time and time again she would do things that were not appropriate, but my parents did not know the law or know any better. Therefore, it went by the wayside. However, one day after an IEP meeting a member of the IEP team told my mother to always trust her gut. What did she mean?

Abuse

The member of the IEP team stated she could not give details because she would lose her job, but warned mom to not send Chad to school. It was unsafe. Yes, you read correctly, unsafe. My father and mother immediately wanted answers, and finally got some they never wanted to hear. The paraprofessional had been seen by many staff members punching Chad in the back of the head and beating him when he had a verbal outburst. Wherever there is a behavior, there is always a trigger. Sadly, Chad’s behavior stemmed from her abuse. My mom confronted the administrator of the school, and he told my mother to quit trying to find things to complain about. He dismissed my mother, only because he too was afraid of the paraprofessional. She was slick, and she had dirt on everyone. My mom went to the Special Education Director, who was known for locking kids in closets and the superintendent. My parents wanted that abuser removed, and it took everything they had to do it.

When my mom tells the story, she says that she was on her way to handle things herself. She was furious and had been pushed aside one too many times that day. My father, who is often more reasonable with his actions, said “No, honey, let us do this the right way.” Immediately my parents searched for legal representation. Call after call, no one wanted to represent my parents against this school system. Finally, in another city, my parents found a lawyer who would take the case. In the initial consult, there were twenty-three IEP violations discovered in addition to the abuse. After a long legal pow-wow, things were finally settled and the paraprofessional was forced into retirement. The sad part, she was “removed” from special education two years prior for abusing another student.

Although things were “corrected” on paper, things were never the same. The school district treated Chad and me differently because we were the “sue happy family”. We weren’t suing for money; we never got any. The only thing we wanted was the appropriate education my brother deserved and for the paraprofessional to be removed from the school. The negative stigma remained, and we decided that it was time to relocate our family to a different school district.

In the change in schools, my mom decided it was time to get her GED and get a certificate in cosmetology. My dad decided he wanted to be more involved with our lives and opened his own business. Again, the poor life was real for us. Just because you own a business, that does not mean you reap all the benefits. Sometimes it takes years just to see a profit, and that was our case. Chad and I were in school together, and it was truly a family school. Chad began to read and speak. Rita Pearson once said that kids do not learn to read from people they do not like, and that proved to be true with Chad.

Teenage Years

I was eight years old, and Chad was finally a teenager. A mom who once spent all evening with us now worked all evening long until 10 p.m. Dad, being the provider that he is, stayed out in the business late learning new things, doing odds-and-end jobs to pay the bills. That left Chad and me in the house alone. I do not have any bad memories of it. The sibling effect isn’t traumatizing for me like it is for some. I just assumed the role of responsibility, and to be honest, I never gave it up. I know that is my role in this life, and I am perfectly happy with that. I would not want it another way.

Chad and I ate pizza rolls a lot for dinner since that was really the only thing I knew how to cook at 8 years old. We would get our baths and go to bed, just to start it all over again the next day. He and I just grew up and learned to take care of ourselves. My parents noticed this, and you could tell it bothered them. Mom eventually decided she would open her own salon to spend more time with us, and as dad’s business grew, he could take time off to be around us more. I have really great parents, and they really have been amazing to us.

False Christianity

As I turned the age of 12 and 13, my life changed drastically. You see, I was raised in a fear-based Christianity lifestyle. When I reflect on it, that is what was traumatizing for our family the most. Luckily, Chad never understood the why of things. His faith has always endured and that is such a blessing.

The church we attended was home, but it was unhealthy. The people who you should count on to build you up were the exact ones who tore us down.  When I say that we eat, sleep, and breathe church I mean it. My parents were so involved, and we were all indoctrinated. Members of the church, adults and teenagers, played a role in using my brother as a punching bag. Not literally, but figuratively. A fake social media account was created, with images of Chad that were not appropriate. Below the images were statuses that stated he was willing to do sexual favors for male or female partners. A young man, who cannot defend himself, was now easy pray for anyone and everyone to make fun of or worse. At the time, we did not have smartphones or even internet, so social media was a blur to all of us. My parents investigated, and sure enough members of the church were the ones who did this sick “joke”.

I remember how the passion and hope left my father and mother. Everything they had ever known and trusted was now revealed as a lie.  A place of healing was now a bottomless pit full of hate, anger, and mental/emotional abuse. and please do not be confused, I am not blaming Christianity, I am blaming the people. Thankfully, Chad never had to endure the pain that we did. Sometimes, ignorance truly is bliss.

My parents did everything in their power to raise us right, to surround us with good people, to instill a love for God, to protect us. Now, it was just a big pile of mess.

After a while, we picked up the pieces of our life, but we never felt whole. We visited a few churches, but somehow no matter where we went baggage followed. We had that label again just like we did in school. We were the ones being blamed, or at least that is how it felt.

Chad graduated in 2011 and was the first in our entire family to participate in a high school graduation, and then we had the choice of what to do after high school. Sadly, we are still figuring this one out eight year later.

I have provided you with a lot of information, and this is just scraping the surface. However, I feel like it is appropriate to begin this series with this: To know who we are, to know the road that we have traveled, and to know my why.

I chose my career because I saw how brutal this world is first hand. I chose my career because I know how much love can impact a child. I have thispassion to help others thanks to Chad. I do not have all the right answers, but what I do have is an amazing family. One who inspires me each and every day. and so, as I begin to tell about my experiences about being a sibling, I want you to reflect on how you encounter families with exceptional needs. Are you building them up or are you tearing them down?

(Editor’s note: Dustin has recently joined our communications team, and we hope this is just the first in a series of posts that will provide a sibling’s perspective on life and events, a view that we’ve had much too little of in the past.)