One Family’s Journey
The Right Choice
We had a new diagnosis—EVA. EVA causes a progressive, fluctuating hearing loss… A sudden drop or sudden loss in either ear could happen at any time, or it might happen years down the road...I truly didn’t know how I could help him function as a deaf child let alone as a future adult.
Our family farms outside the small rural town of Yuma, located in the northeast corner of Colorado. The oldest of our five children is David, who is seventeen and a senior at the Colorado School for the Deaf and the Blind (CSDB). He is the only one in our immediate family who has a hearing loss.
We believe he was born with normal hearing but was later diagnosed with a bilateral hearing loss after age three, just passed the window for early intervention. He received hearing aids at age four and we received schoolbased services through our Board of Cooperative Education Services (BOCES), including a teacher for the deaf and speech therapy. The IEP meetings began, and they got more difficult as he got older. David, even at a young age, showed great academic potential.
One Piece of the Puzzle
Third grade was a challenging year for both David and us. He had conflicts with the classroom teacher and began having issues with his peers. Two months into the year, we found out that David had significantly dropped in hearing. This was part of the reason for his struggles! We had a new diagnosis--Enlarged Vestibular Aqueduct Syndrome (EVA). EVA causes a progressive, fluctuating hearing loss. A sudden drop or sudden loss in either ear could happen at any time, or it might happen years down the road. Any change could be temporary or permanent. EVA was just one turn on our roller coaster ride on this journey as we wondered how best to support him. I truly didn’t know how I could help him function as a deaf child let alone as a future adult. I prayed for God to give me and our family wisdom, strength, patience and faith. We would do our best for David whatever that needed to be. I will never forget the reassurance David tried to give me when he said, “Mom, if I go deaf… I will be okay.”
Before each school year began, I made sure to discuss the Educator’s Guide to Hearing Loss with David’s teachers and administrators and share about David’s unique needs and strengths. Our BOCES doesn’t begin providing services until about two weeks after school starts, so it felt like we were playing catch up before the school year got underway. While David had some great teachers, others were not as understanding of the impact a hearing loss has socially or academically. David could be very social but he had difficulty understanding and learning social cues. He wanted to have conversations mostly about specific topics that interested him. David needed specific preparation and explanation before a social event or needed to know what to expect in the typical day ahead. He always would ask: “So, what’s the plan?”
Sixth and seventh grade were difficult years. David had significant hearing fluctuations, numerous conflicts with a few teachers and administration, and bullying became more frequent and severe. At times, the classroom noise was too much for him and he had to sit in the hallway. Staff from Children’s Hospital and the DEAFDOVE visited the district through outreach support. We began to hear about the Colorado School for the Deaf (CSDB) from them, and from a resource teacher who shared with us what she learned from being at CSDB. She kept encouraging us to look at their programs.
Because of all these issues, we decided to apply to a school outside our district for David. Derek, his younger brother, decided to attend Lone Star, too. He is only a grade below and was facing some issues that carried over to him. The boys found great support from the administration and staff. It was the first time they had a student with a hearing loss in their school but were willing to learn. It was small but very supportive to both and had high expectations. Siblings need support, too. A younger brother, Andre, entered Kindergarten at Lone Star, also. (They have since returned to their home schools in Yuma.)
That summer we enrolled David in a sports camp with a dorm stay at CSDB. As I was driving the three hour trip to camp, I thought to myself--what am I doing? I am leaving my child with people I have never met! Although I had spoken with the staff at length about the program, I was nervous. David, on the other hand, was excited because he was going to meet new kids…like him. We had been to HOST day (an terrific annual social event for deaf/hard of hearing students in northern Colorado) every year since he was identified, but this was different. We had a great welcoming and David seemed comfortable but it was still difficult to leave.
I broke down crying on the way home. It wasn’t only because I had just left my son, but also because I had seen all those kids and adults who were deaf. I knew then that David was going to be okay. He was right. On the way home from camp, David summed it up in one sentence: “Mom, I didn’t have time to miss anyone; I was having so much fun!” He had never said that before. My heart broke that he had to go so far away to feel part of a larger group, but so happy he experienced belonging. Before we left, I spoke with Dr. Laura Douglas and she said he had picked up some sign language and was using it to communicate. It was amazing to see him use the ASL he learned at camp that was so new to him as we were just starting to learn ASL at home. We knew some basic sign language but weren’t really learning ASL yet.
Next, David attended a college fair at CSDB. Eventually, I shared David’s struggle with social skills as discussions with staff went deeper. After jumping through some hurdles with BOCES, we were approved for an evaluation. We had needed this extra support for a long time, but despite my pleas for help, I hadn’t learned that CSDB was available as a resource. I would have found a way to pay privately if not approved. CSDB’s evaluation gave us the encouragement to seek confirmation on a diagnosis. Once I learned more about this possible diagnosis it made sense to me. Upon confirmation by a private clinic, David once again summed up his reaction succinctly to this news: “Well, there you go!” he said. Now we had an answer and some new tools for so many difficult situations David found himself in. It was no fault of David’s or anyone’s. This is just part of who David is. CSDB worked with David’s school to provide social skill supports, and helped both the staff and our family understand how best to support David with this new piece of the puzzle. They used technology to connect with us, such as through their distance learning room. We were able to continue services throughout the summers as well.
The kids and I attended the Family Learning Retreat on campus before David’s freshman year. (My husband had to tend to the farm.) We met several adult role models who had been former CSDB students. After listening to them, I was overwhelmed with conflicting emotions again. I knew I could love David, support him, encourage him and his siblings, staff and classmates but I could not provide the sense of belonging that he needed and wanted. I had to tell him that CSDB was an option. This was difficult to share but I couldn’t and wouldn’t keep this opportunity from him.
During his freshman year he spent a few trial days at CSDB and I was able to see a typical school day. Afterwards, he said he had a lot to think about. Later that spring, he told me he wanted to transfer there; he felt he needed to socialize with other d/hh kids and knew he could not get that back home. He attended CSDB as a new sophomore. For one class, he “reverse-mainstreamed” into Palmer High School, a public school near CSDB which has a centerbased program for students who are deaf or hard of hearing. He also took formal ASL classes. David would come home on weekends and vacations but was always eager to return to CSDB. We had great support from his school and our local district office.
He has and continues to participate on the Academic Bowl team and plays basketball at school. CSDB allowed his brother Derek to stay in the dorms and join basketball camp for a week, which was a great opportunity for both boys. David also participated in a Bible study on campus which was very important to him. David took more classes at Palmer in his junior year. He earned approval for a room in the Student Resident Assistant dorm, which has to be earned through leadership qualities. He was inducted into the National Honor Society and earned several school awards.
Now a senior, David serves as Student Government Body President and attends Pikes Peak Community College for two of his classes. He began to work in the local public utilities company’s water treatment facility as part of the On the Job (OJT) training program. He has presented as president to the Board of Trustees. Counseling sessions have dropped to monthly. He continues to maintain a high grade point average and the part time job he holds at home. He is driving himself to and from school. We have had recent support from our local administrators to have David included in activities to encourage inclusion among his peers at home which David looks forward to.
His teachers marvel at how much David has grown as student and as a young man since arriving. He advocates for himself better than I could have imagined. He is willing to try anything. I know he has made some lifelong friends there: he will always be part of the CSDB community. David is filling out an application for the Rochester Institute of Technology/National Institute for the Deaf in New York. While it will be a difficult decision to make with RIT so far from home, I think the experience at CSDB has helped prepare him and us for his transition into functioning as a deaf adult in any community.
Many people will never understand our decision to allow him to attend a school so far away. I think David’s success is its own answer to anyone who questions our decision. That difficult decision was the right one--without it, we wouldn’t have the confident and adventurous David I know today. Sure, not every day has been perfect at CSDB, but the many different experiences have been priceless. CSDB has helped to encourage what we teach at home; faith, independence, confidence, accountability, responsibility, acceptance of others and more. There is more than I can share here, but I hope parents will be encouraged through our story to keep looking for answers and reach out to others, and reach out again. Do what feels right and trust yourself.
I can truly see David speaking on some future retreat panel telling young students and parents why attending the school for the deaf was the right choice for him.