How it started
The workshop began as a collaborative effort between the Division of Pediatric Otolaryngology & Audiology at the University of Michigan and the Early Hearing Detection and Intervention (EHDI) Program at the Michigan Department of Community Health (MDCH). Both of these groups work with infants and their families at the time of initial identification of hearing loss and recognize the unique challenges and needs faced by parents raising children who are Deaf or Hard of Hearing.
Why it is needed
For the last fifteen years, universal newborn hearing screening has dramatically decreased the average age of identification of hearing loss from 2.5 years to less than 6 months of age. Learning about hearing loss before speech and language delays are evident has allowed intervention to focus on keeping speech and language skills on track, instead of helping kids catch up. Traditionally, many kindergarten children with hearing loss benefitted from the structure of a small self-contained classroom with additional focus on boosting language skills. Today, many have normal or near-normal language skills and are well prepared to thrive in their local mainstream classroom.
If there is a down-side to the success children with hearing loss achieve, it is that they are often the only child in their school using sign language, hearing aids or cochlear implants. Similarly, their parents may not know any other families facing the struggles of raising a child with hearing loss. This workshop provides one day each year for children and their families to learn and connect with others just like them.
Initial Vision and Core Beliefs
The initial planning meeting included staff from each program along with parents. The parents in attendance steered much of the discussion making these key concepts evident:
- For families to attend, child care and activities for older children should be provided.
- Hearing loss impacts everyone in a family, not just the child with hearing loss. The entire family, especially the siblings with typical hearing, should be considered during planning.
- Parents want to learn new information, but also have time to meet other families.
- All communication modes should be welcomed and respected. Communication Access Realtime Translation (CART) and sign language interpreters must be available throughout the workshop.
- Registration fees should not prohibit families from attending. Scholarships should be available to families as needed.
Parent education sessions include both general plenary and concurrent sessions. Concurrent sessions allow parents to pursue presentations that may be specific to their child’s age or communication modality. In response to feedback that there wasn’t adequate time to meet other parents, the time for lunch was increased and tables were “hosted” by a parent volunteer or adult who is Deaf/Hard of Hearing. This allows families a chance to connect with other families like themselves in a safe and welcoming environment.
Childcare is offered at no additional cost for infants and toddlers. The inclusion of childcare has been important to offer so that parents of very young children may attend and participate fully in the workshop.
Elementary-Aged Children (PreK – 5th grade) are assigned to a classroom that is led by a volunteer Teacher of the Deaf/Hard of Hearing. Children are grouped by age, but not by their hearing status. Each classroom includes children who are Deaf/Hard of Hearing (who may use sign language, hearing aids or cochlear implants) along with siblings with typical hearing. This provides a unique opportunity for children to meet others with a similar experience of either growing up with hearing loss or being the sibling of a child who is Deaf/Hard of Hearing. Activities are planned to be interactive, fun and centered on topics unique to growing up with hearing loss.
Middle School and High School students are similarly assigned to classrooms led by volunteers with extensive experience working with teens. Similar to their younger counterparts, activities are designed to be fun and interactive with learning focused on preparing for transitions whether they are on their way to high school, off to college or entering the work force.
Location of the workshop was changed when it became apparent that families from the Northern and Western areas of Michigan were not represented. 2016 was the first year the conference was held in Lansing. While the overall attendance numbers were slightly decreased in 2016, we hope to see an increase in 2017.
Feedback and Results
There have been five Family Matters! workshops (2014-2018); the first two were located in Livonia and the most recent event was in Lansing. Below is a table showing attendance for the first four workshops.