Children with Type I Usher syndrome are born profoundly deaf and have balance issues that can have an impact on the child’s development. Communication and language are of primary importance, and parents can gather information from a variety of sources including: early support specialists who work with children who are deaf/hard of hearing, parents and “Guide by Your Side” programs, adults who are deaf/hard of hearing, and hearing health professionals. Early support services should be unbiased and consider the individual child and family’s needs, so that the child can take advantage of the unique window of time during which the brain is most receptive to learning a first language, whether spoken, signed or both.
If a child is diagnosed with Type I Usher syndrome early on, before he loses peripheral vision, the child is more likely to benefit from the full spectrum of support that can help him have a more active life.
Because of the balance problems associated with Type I Usher syndrome, children may take longer to learn to sit without support and may not walk before they are 18 months old. These children usually begin to develop vision problems in early childhood, almost always by the time they reach age ten. Vision problems most often begin with difficulty seeing at night, and progress at varied rates until the person has tunnel vision. (Adapted from “Fact Sheet on Usher Syndrome,” NIDCD article, listed in links.)
There are people with Usher Type I who are fluent in two or more languages, are leaders in their communities and live active lives. According to Patricia Lago-Avery, retired counselor from NTID*, people with Usher syndrome can be found working as: author, researcher, professor, chef/owner of restaurant, lawyer, certified public accountant, information technology specialist, computer programmer, public health manager, counselor, minister, librarian, veterinarian, health planner, clerk, medical transcriptionist, mental health counselor, and high school teacher.
Parents and professionals can help children with Usher syndrome connect with adults who have Usher syndrome in a variety of settings. There are things only another person who is living with vision changes can understand… about adjusting, and the tools and services that can increase a personï¿½s independence. All children are children first, and developing self-awareness takes time. Connections between children and mentors can have a very positive impact, if the relationships are nurtured over time, at gatherings that include age-appropriate activities for kids and families to interact with adults who have Usher (e.g. shared meals, tandem bikes, cane races for blindfolded parents, chat time in small groups, skilled interpreters).
*NTID: National Technical Institute for the Deaf
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See video of Patrick Cave, Deaf-Blind Etiquette