Parents Sharing Their Experiences

ANOTHER SUCCESSFUL EVENT BY BC HANDS & VOICES

On Friday, October 16th, BC Hands & Voices held its 3rd event, this time hosting a parent panel. The event was held at Provincial Services for the Deaf & Hard of Hearing, at the Victory Hill site in Burnaby. We would like to express our gratitude to them for allowing us to use their boardroom for our event.

The panel was made up of parents who are either or both on our BC H&V board or who are members of BC H&V and are parent guides from the Guide By Your Side Program. Participating on the panel were: Amy Ho, Bobbi Best, Terri Dauvin, Monique Preer & Chris Mallinson. Each of the parents on the panel hoped to share their experience and knowledge in raising a child with a hearing loss with the parents in the audience and to answer any questions that the audience might have.

14 parents and a family friend attended the evening and made up our audience. Not a bad turn out for such a miserable night… rain, rain, rain. The evening proved to be a success, however, there was just not enough time, as is usually the case.

Upon arriving and settling in, we began by introducing the Hands & Voices board parents and parents on the panel.

MODERATED QUESTIONS COVERED THE TOPICS:

  1. What challenges the families faced and how they worked through them
  2. How they dealt with questions or lack of questions from relatives and friends
  3. How immediate and extended family members were affected by their child’s hearing loss
  4. Their feelings on the roles of Dads vs. Moms

THOUGHTS & EXPERIENCES SHARED BY THE PARENT PANEL:

Dealing with challenges It was difficult to find services in outreach communities. However, supports are available if one is willing to do the work of looking, asking, and sometimes traveling to find them. Being the main person to become educated about hearing loss and what to do to help his/her child. The parent is then considered the “expert” and feels the responsibility of making his/her child’s experience a success. One parent wished she had involved others (family & friends) in appointments and in the education process.

Being new to the country and not knowing what resources were available.

Having to choose a program for services and make decisions like “use sign language or an auditory/oral approach”. One parent felt she needed to make one choice versus the other, but later learned that they could change their approach as their child’s needs changed.

One child was born with many other challenges. When the parents learned that their son had a hearing loss, it was viewed by them as an issue that could be dealt with later, when their child was well enough to come home from the hospital.

Questions or lack of questions from others.

Gave them the facts/information about their child’s hearing loss and hearing aids.

Shared with them some ways to communicate with their children.

One parent commented that, “I am always pleased when people ask me questions about my son’s hearing, as I feel that teaching the people in his life about his hearing loss will ultimately help him.”

IMMEDIATE & EXTENDED FAMILY

Extended family benefited a lot from having children with a hearing loss in the family. They were brought together in a way that might not have happened otherwise. They all learned a lot about tolerance and acceptance.

One son who is sandwiched between two deaf siblings finds it hard sometimes, so his parents do their best to find time to spend with him alone. One parent talked about how her family all went through a grieving process, but was confident that they could handle the challenges, and that their deaf daughter could do as well as their hearing son. She also commented that there was a very strong bond between her older son and her daughter with a hearing loss, and they value each other’s ideas/ views very highly. For example, when her daughter was in Grade 11, she wrote an award-winning contest essay about how her older brother helped her improve her reading skills by bribing her with her favorite candies to get her to read more advanced books when she was in elementary school. A few years later, her hearing son would write a university Psychology paper about how his deaf sister acquired the English language despite her deafness.

ROLES OF DADS VS. MOMS

A Dad’s role is very important and just as important as a Mom’s role. Sometimes, husbands can come to meetings and doctor’s appointments, other times work prevents them from coming. One parent said that she is, “always careful, when I talk at these appointments to say ‘we’ because even though he is not there, it does not mean we have not discussed this at home (together as parents or as a family),” and this should be made clear to the children and others. Mothers and fathers should share the same responsibility.

One couple attended almost all medical and school appointments together except for the weekly physiotherapy sessions for their daughter’s first 2 years. When advocating for their daughter, one husband often edited the letter that his wife wrote so as to add more emphasis to the request by making it more concise.

The only father on the panel talked about how he had attended all of his son’s many surgeries, but felt terribly guilty when he had to miss one minor surgical procedure.

We all agreed that it is important that having both parents active and involved will lead to the greatest success for the child and the overall well-being of the family. It is crucial that everyone feels supported but this can look different in every family. A parent in the audience wished to hear from the panelists about their deaf/hard of hearing children and the children’s participation in group activities such as sports, clubs, etc.

RESPONSES FROM THE PANEL

“My daughter is involved in several different sports. She participates in dance classes, basketball, horseback riding and cross-country running. She likes to ride her bike and four-wheeler. She has joined other activities like piano and choir. We find it helpful to use the FM system when we are going for a family bike ride.”

On self-advocacy: Give your child the choice about providing information about his/her hearing loss to those involved (coaches, instructors, leaders, and the other children). Do they want to talk about their hearing loss themselves or would they prefer their parents to give that information? Ensure your children make people aware of their hearing loss when they are in situations where they cannot hear. For example, children do not wear their hearing equipment when swimming. Tell your child to inform the lifeguard, “I am deaf and can’t hear you” when the lifeguard is talking to him or her. Parents found it really helpful to be a parent helper or leader in their child’s activities. One parent always went on field trips with her son, which was a great time for other parents to ask her questions about his ears and hearing aid. The questions came up naturally and she was able to help them better understand his needs. She recently was a trip chaperone, and even though her son is now a teenager, she was amazed at how many of his peers, other parents, and instructors asked her questions about his hearing.

One parent asked the swimming instructor to let the other children go first so that her son could watch the other children and know what to do, since he couldn’t hear the instructions. She also talked to the instructor or coach ahead of time, with her son, to explain his needs. As the son grew older, he took this role upon himself.

Unfortunately, this was when we ran out of time. We were happy that all the parents had an opportunity to talk and share their stories with each other during the break. We seasoned parents really understand and appreciate the value of parents networking. Thank you to everyone for coming out to this event and for taking part in the evening. For those of you who could not make it, we hope to see you at our next event. We are aware that some of you could not make it due to the fact that we were unable to provide child care. We apologize for this and hope to better meet this need in the future.

We welcome any ideas you might have for future events and please let us know if you have any to share!!

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