My Story: Hailey Schmidt, Northeast Region
When I was 13 months old, I was involved in a head-on collision with my family. In the accident, I received such bad whiplash from my car seat flinging forward, my spinal cord was bruised leaving me a quadriplegic. I was hospitalized for 6 months. During this time, I was trached and on a ventilator, tube fed, and catheterized for urinating.
Returning home was a big lifestyle change for all of us. We had to adjust to transporting a ventilator, a kid cart, and all of the supplies I needed while out and about. Since leaving the hospital, I have had multiple surgeries including spinal fusion, bladder augmentation, and a mitrofanoff.
I went through school by attending a regular classroom with a nurse and paraprofessional. I always struggled making friends due to my disability but made good grades and held my head high. I am currently a high school graduate and attending Jefferson College, studying accounting. I am a happy individual with a great outlook on life. My family, including 2 younger brothers, love me so much that helping me is never a chore.
*Hailey connected with the Northeast SHCN Family Partner, Pat Fox, to locate a resource to assist with purchasing a pool lift. Pat located a grant opportunity through the Kelly Brush Foundation. Hailey completed the application and was selected to receive the requested equipment.
Parent-to-Parent Sharing: Courtney Wright, Southwest Deaf/Hard of Hearing
In March of this year, I had the opportunity to go to the Early Hearing Detection & Intervention (EHDI) conference, in Denver, Colorado. This was an opportunity that was unlike any I had experienced before, and one that I will not forget. I am the mother of 3 children. My youngest son, Reid, was born deaf. He was 4 months old when we received the diagnosis. We are a hearing family; however, since Reid’s diagnosis, we have also found that my husband also has genetic, progressive hearing loss. The past 3 ½ years have been a whirlwind of appointments, therapy, and specialty visits. I have found myself learning how to troubleshoot cochlear implants, trying to become fluent in ASL, and understand deaf culture. I was excited to go to EHDI to learn more about how to support my son.
When I entered the conference center, I knew that this would be different than anything I had experienced before. I witnessed people communicating through sign language and cued speech. Both hard-of-hearing, deaf, and hearing individuals were all communicating together. People were laughing, hugging, and genuinely excited to see each other. That’s something that I noticed throughout the whole conference was how deep the connections are in the deaf community. Many of these individuals may only see each other yearly at the EHDI conferences, but their connection runs deep.
A wide range of individuals and professionals attend the conference. I was in classes with hearing-impaired individuals, family members, speech therapists, audiologists, researchers, product developers, state workers, and those with many other titles. That is what is so special about EHDI, it brings those with different experiences and perspectives together, with a goal to better serve our deaf community. Personally, meeting the families of those raising deaf children was the most impactful experience. The first night, there was a parent’s meeting. This was more of a social event and children were invited. Families introduced their selves and told their stories. At this event was the first time I heard the term, “deaf plus”. It was that night I realized that I was parenting a child that was “deaf plus”. This term is reserved for those that are deaf but have other medical conditions that add to their medical needs. Throughout the conference, there were many courses and even one of the opening lectures that talked about deaf plus and how the community as a whole can better support individuals.
The courses that I took were very informative and I took away so much information. I was exposed to things I was completely unfamiliar with, such as cued speech. We were able to learn of different research being conducted and given a glimpse of ways that technology may be able to support hearing impaired in the future. But my main takeaway was how welcomed, supported, and encouraged I felt throughout the whole event. I will always remember an experience where a vendor and I were attempting to communicate through ASL. I quickly realized I was over my head and was struggling to communicate. I was unaware that there was an ASL interpreter behind me. She quickly jumped in, not to take over, but to assist me in communicating. That is how I left EHDI, feeling more equipped, encouraged, and empowered.
*The Missouri Newborn Hearing Screening Program provided funding to SHCN Family Partnership to encourage parents of children who are deaf and hard of hearing to attend the 2024 EHDI Conference, in Denver, CO. Courtney was one of three parents selected, who received the opportunity to attend in-person.
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