Deaf/Hard of Hearing Plus

Finding Family: Building Our Support Network

By Betsy O’Neil, Wyoming H&V

Hands & Voices has been an incredibly supportive resource for our family since our child, Loren, was diagnosed with a hearing loss at about a year old. Hearing loss was his first diagnosis with many more to come. While we were searching for additional answers, we were embraced whole-heartedly by the deaf and hard of hearing community in our state, including Wyoming Families for Hands & Voices. I think of this community as our first “family” that led the way for us to connect with many more disability communities.

Loren has since been diagnosed with a peroxisomal disorder, which is a rare, genetic, terminal condition that affects all the major organ systems in his body. He is on the mild to moderate end of this disorder’s spectrum so his decline will be more gradual than someone on the severe end. We’ve already seen losses, including hearing, vision, motor and cognitive areas. Loren’s hearing will become gradually worse, probably resulting in the need for cochlear implants someday. He will likely never walk on his own and he is slowly going blind.

Once we had his diagnosis, we desperately needed more support from families that had experienced what we were going through. Loren’s doctors got us in touch with another “family” that has become very important to us – the Global Foundation for Peroxisomal Disorders (GFPD). The GFPD has many supports for families including a parent support group on Facebook, an equipment exchange, and a bi-annual family conference.

One of the most devastating aspects of Loren’s disorder is his retinal dystrophy in combination with his sensorineural hearing loss. The dual sensory disability of deaf-blindness has been difficult for his father and me to wrap our heads around. We wonder what Loren’s life will be like without the ability to hear and see well. We want to give him as many visual experiences as we can now while he still has decent vision. But we know every year will bring additional loss with almost complete loss coming sometime during his teenage years.

The GFPD family conference was scheduled about six months after we received Loren’s diagnosis and we knew we had to find a way to attend. Many of the sessions had a focus on deaf-blindness and would give us insight into what Loren and our family might experience in the future. The conference organizer told us that we may be able to get some funding assistance to attend through our state’s Deaf-Blind Project.

The Wyoming Deaf-Blind Project saw how valuable the information about deaf-blindness would be to our family and gave us some financial assistance to attend the conference. Their generosity enabled me to attend with both of my children.

Liam, my oldest, attended sessions specifically for siblings. At age 10, he learned more about his brother’s disorder by attending a deaf-blind simulation and multiple workshops exploring the senses. I attended sessions on deaf-blindness, occupational and physical therapy strategies, equipment needs, IEPs, the progression of the disease, and many other topics specifically tailored to kids with peroxisomal disorders. Loren spent time in quality care with other kids with his disorder, playing with sensory stimulation toys for deaf-blind children. The best part of the conference, though, was meeting and learning from other families. We made many lasting connections and hope to go to the next conference to see everyone again and learn even more.

Since attending the conference, we have developed even more connections and “families” including the Child Development Center of Natrona County (Loren’s preschool), Wyoming Vision Outreach Services, and disability support groups in our hometown of Casper, Wyoming. Having a strong support network, both locally, regionally, and nationally, has given us a wealth of additional resources, support, and hope.

I would encourage all parents of children with disabilities to find your support networks if you haven’t already done so. If you need help, your local Hands & Voices group and the Guide By Your Side program can help you make those important connections.  ~

H&V Communicator – Summer 2020