by Kim Shauer
My name is Kim Shauer and I’m a mom of two terrific daughters, Ashley (11) & Julia (8). Julia was born with a chromosomal condition, which began a journey I had never anticipated – into hearing loss and many other services for our family: see Julia’s Story. We thrived on parent-to-parent support in those early days (and still do!) so I was thrilled to become a Parent Guide with the Hands & Voices Guide By Your Side Program six years ago. This led into coordinating the Guide By Your Side Program’s parent guide support for parents whose babies are identified with hearing loss through the BC Early Hearing Program’s newborn hearing screening.
Guide By Your Side Parent Guides 2016
I remember having a lot of questions in the early days. I wondered what it was like for my daughter to wear hearing aids and how she was going to be able to do certain things that I had taken for granted, being a hearing person myself. Early on, I had the opportunity to meet both Deaf and hard of hearing adults who made me feel hopeful about all of the things people who are deaf and hard of hearing can do (pretty much everything!). However, I wasn’t sure if could ask the personal questions I really wanted to ask: What was it like growing up with a hearing loss? How were you treated at school? What’s the best/worst thing for you about having a hearing loss?
It wasn’t until a few years later through my connections at Hands & Voices that I took the opportunity to ask some of these questions that remained inside me. Having those answered enhanced my knowledge and helped me feel less anxious and more hopeful. I realized how important it is for parents to be able to ask those questions safely and with permission right from the start. Fast forward to my recent involvement with the expansion of the Hands & Voices Guide By Your Side Program to include Deaf and Hard of Hearing (DHH) Guide role models on our team. I was so excited to promote opportunities for every parent to ask their questions sooner!
Addition of Deaf and Hard of Hearing Guides to Guide By Your Side May 2016
There are families who express “I don’t feel ready yet” at first, and others who react with “Yes, give me every resource you have available!”, and we respect that families have different needs at different times. Most importantly, when parents do connect with a DHH Guide, they’ve told us it is positive and have said “I know my child will be okay” and “I was very happy with the support and really grateful”. One family recently commented “Thank you so much passing the request to the DHH Guide. I just received a very kind email from Christy today. Her tremendous experience must be an important asset to us.”
If you have any questions or feedback for our program, I can be reached at (604) 612-9193 or email@example.com.
A little history: BC Early Hearing Program Deaf and Hard of Hearing Advisory Group Recommendations
The expansion of the Hands and Voices Guide By Your Side Program took a few years to happen. In 2013, BCEHP established the BCEHP Deaf and Hard of Hearing (DHH) Advisory Group*. This group includes representatives from the three primary parent organizations for parents of deaf and hard of hearing children, as well as DHH individuals who represent a range of communication and language choices and who provide support to parents of school-age DHH children in their professional lives. After reviewing recommendations from other jurisdictions and other DHH role model programs, this group recommended the addition of DHH Guide role models to the BCEHP Hands and Voices Guide By Your Side Program.
A two phase approach was taken to achieve the goal of DHH infusion and ensure BCEHP’s program aligns with the Joint Committee on Infant Hearing (JCIH) and best practice as defined by International Consensus. Phase one was development of the video “Nice To Meet You,” which is available on PHSA Youtube and the BCEHP website. Implementation of phase two began in May 2016, when DHH Guides started “meeting” families alongside Parent Guides through our Guide By Your Side Program. BCEHP Service Coordinators now present the opportunity for Parent Guides and DHH Guide role models to contact parents in the early stages after learning their baby is deaf/hard of hearing. Guides initially introduce themselves to parents in pairs or as a team by email. Locally and in some communities outside of the Lower Mainland, there will also be opportunities to meet DHH Guide role models at family and workshop events. To stay informed about these and other opportunities, parents can sign up for our monthly email notification “Information for Families (Hands & Voices Guide By Your Side & BCEHP)” by emailing me at firstname.lastname@example.org.
*Note: The DHH Advisory is different from the Sign Language Advisory, who developed the standards for sign language instruction with families with infants. BCEHP funds the first two years of sign language instruction, after that MCFD funding is used. Please contact your Service Coordinator with BCEHP or your early intervention provider if you are looking for sign language instruction for your family.
The nitty gritty: support and research for families to have Deaf and Hard of Hearing Role Models
- Joint Committee on Infant Hearing (JCIH) Position Statement 2013:
- Goal 11: All Children who are Deaf/HH and their families should have access to support, mentorship, and guidance from individuals who are Deaf/HH.
- Best Practices for Family Centered Early Intervention for Children who Are Deaf or Hard of Hearing: An International Consensus Statement (Journal of Deaf Education and Deaf Studies 2013)
- Best Practice Principle 4: Families are connected to support systems so they can accrue the necessary knowledge and experiences that can enable them to function effectively on behalf of their deaf/hh children.
- In addition to support from qualified professionals, FCEI recommends parent to parent support and support from Deaf and Hard of Hearing individuals.
- Research by Dr. Alys Young (Univ. of Manchester), evaluating outcomes from U.K. Deaf Role Model Program. Benefits to parents included:
- Parents felt reassured, more positive about their child’s deafness and more confident about the future.
- Parents felt they were better able to see the potential of their child.
- Parents could ask “curious” questions that they had not been able to ask of professionals.
- National Centre for Hearing Assessment and Management (NCHAM serves at the (U.S.) National Resource Centre for the implementation and improvement of comprehensive and effective EHDI systems.) NCHAM e book (2014) A Resource Guide for Early Hearing Detection and Intervention, Chapter 10 by Dr. Marilyn Sass-Lehrer.
- “Deaf and hard of hearing adults provide an important source of support that can strengthen the family’s sense of well-being and the child’s social-emotional development (Hintermair, 2000, 2006 Meadow-Orlans et al., 2003.”
- “Families who have had regular interactions with deaf or hard of hearing adults demonstrate better communication with their children and a more realistic understanding of what it means to be deaf or hard of hearing than those who have not.”