My Success Story

Authors: Garland Goodwin, Rising College Student

Keywords: CHARGE, intervener, advocacy, accommodations, student success, public school

Abstract: Garland, a student with CHARGE Syndrome, describes his public school experiences and the supports that allowed him to participate completely and successfully.

My name is Garland Goodwin, and I am 18 years old. I am going to be a freshman at Tarrant County College this fall. I am a young man with CHARGE syndrome who completed public school in Fort Worth, Texas.

Garland as a teenager, wearing a hat and glasses and posing for a picture in front of his home

Garland Goodwin poses in front of his house.

CHARGE syndrome is a disorder that affects many areas of the body, and the letters that form the word “CHARGE” stand for these different areas. Because of CHARGE syndrome, I have a swallow dysfunction and had a G-tube from birth to 5 years old. I also have inner and outer deformation of both ears, which is the reason I have super powerful hearing aids along with a speech impairment. I have bilateral colobomas and am considered high risk for retinal detachment. My low vision is the reason I wear special glasses with thick lenses. I also have many other characteristics of CHARGE syndrome.

When I was little, I used to really like Thomas the Tank Engine. I have always loved collecting Transformers, Power Rangers, and Build-a-Bears. In elementary school, I started Tae Kwon Do. It helped me gain more balance and confidence. In high school, I took theatre as my elective. I liked helping to put the sets together and finding different music scores for the scenes. I even wrote a play that was performed by real actors at Stage West Theatre in Fort Worth. I love volunteering at the Ronald McDonald House in Fort Worth, doing simple things like cleaning the playrooms for the kids. I enjoy bike riding with my mom on my bike. I love traveling all over the country and camping with my family. One of my other favorite things to do is drive my golf cart around my neighborhood, but it is even more fun to drive others around!

Garland, as a teenager, sits in the driver’s seat of his golf cart.

 Garland cruises the neighborhood in his golf cart.

I’d like to talk about how I was successful in public school while working with accommodations provided by the school district. I started public school early, when I was only in preschool. The school I went to had interpreters and knew how to teach students who were deaf. Most of the other kids in my class were profoundly deaf. I switched schools when I started kindergarten because the teachers at the new school were more caring and willing to work with the IEP. At the end of first grade, I had a consultation from the Texas School for the Blind and Visually Impaired (TSBVI) at both home and school. That consultation helped me get lots of accommodations for school. TSBVI Outreach ended up coming back in fourth grade to consult again and help train my teachers. In fifth grade, I got my first intervener, and I did a little better in school. In that same year, I got bullied in the bathroom by some students who turned off the lights while I was in there. After that incident, my mom suggested the school allow me to use the teachers’ bathrooms instead. Because it was put into my IEP, I continued to use the teachers’ bathrooms throughout middle and high school.

My mom advocated for me and for all my accommodations. We held ARD meetings twice a year until seventh grade to ensure that my teachers still understood the accommodations and to make any changes that were needed. My mom worked with others in the district and TSBVI to advocate for me. My mom always did her research on what to ask for, then made suggestions for the accommodation. She would remind everyone in the meeting that they were ALL here to make sure the committee did not set me up for failure. She learned so much about the system from all the advocating that she did for me that she ended up being able to help other parents of children with special needs.

Garland as a teenager, wearing a hat and glasses, poses with his mother who also wears a hat and glasses.

Garland poses with his mom, Michelle.

In sixth grade, I moved to a school that combined middle and high school grades. I began working with a new intervener and had increased accommodations. Because of my vision problems and the really bright skylights in the school, I was allowed to wear a hat inside, even though it’s against uniform code. My teachers provided me notes, and my intervener was my scribe, so she wrote down my answers for me. I used the elevator because the stairs were crowded, and I could lose my footing and fall, quite possibly losing my residual vision if my retinas detached. I was allowed to leave five minutes before class was over so I could walk when the halls weren’t crowded with students. During testing, I went into another room by myself with my intervener or someone to scribe and read the questions for me during the test. My intervener has been the biggest influence in my education.

In middle school, I was able to do Junior Cadet Corps. I was able to be in a military-like program, even though I can’t join the real military. I loved middle school because I knew what to expect from the schedule, and the teachers were following the IEP we had in  place. High school was similar to middle school because I didn’t have to change schools. I had the same intervener that I got in seventh grade, and she’s awesome! The teachers worked with my intervener to make sure that I stayed caught up and that I had large print paper and materials that we were using. My school district provided every student with a laptop. My laptop had Dragon software that translated voice to text so I could easily speak and the words would appear on the computer screen. This helped me quickly get my ideas written down, which I can’t do very well in writing because I have a “Written Expression Disability.”

In high school, there were lots of technologies that helped me be successful in completing school work. I used special magnifying devices, Dragon software, and other computer programs. I tested out many programs and devices that could help me until I found the one that worked best for me.

My overall experience with the public school system and having CHARGE was mostly positive. I had lots of people supporting me including my parents, teachers, administrators, therapists, and friends. I always worked really hard in school, and my parents always supported me. My experience has been different in the fact that I have helped my parents shape the future of my education and that of other kids with disabilities and special needs. If I had any other disability besides CHARGE syndrome in school, it would be completely different, but I still had a really awesome experience. I got to help teach others about CHARGE syndrome, either just by being there, or by having them help advocate for me in the educational system.

Because CHARGE Syndrome is so complex, it can be difficult to receive a public education. More parents with children who have CHARGE syndrome should be able to go into the public school system confidently, knowing someone has done it before and has been successful. I consider myself a success story because I have made it through a huge portion of my educational career. I have had As and Bs in school the entire time, and I worked hard to earn them. Nothing was ever just handed to me. I feel very smart in the fact that I have learned a lot in school. I can read and write, even if my handwriting is not the best. I can do math, and I even like math! I like every subject in school, no matter how hard it is. I like a challenge, and I LOVE to learn!

I graduated in the top 20% of my class with a distinguished diploma and a 3.9 GPA. I plan to attend Tarrant County College with a full course load for the fall semester. For now, I plan to pursue a Business Administration degree. I hope that my actions inspire any person with a disability or special needs to do what I have done. I more than made it through public school. I am doing well and have goals for my future. From my story, I want to inspire more special needs kids to attend public school. I want to inspire the parents to put their kids in public school. Public school will allow the students to teach others about their disabilities. I want to also assure parents that there are things that can help their students that are free when needed.

I want to let parents know that having a kid with special needs is just like having any kid, just with a disability. It’s not a curse. It’s not “why me.” You shouldn’t have negative expectations of your child. They are special in their own way, and they can be successful. You only need to worry about helping them know who they are and how to work hard. For a parent who is putting their child with special needs in school, I advise to keep pushing for those accommodations. The district may say no, but the parent knows their child best, and your kid may really need them. Don’t give up. Always keep trying to get your child the correct accommodations.

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