A Parent Interview On Personal Experiences

A Parent Interview on Personal Experiences

Nathan Chiu
UBC

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Friday morning, sitting in the hallway of an elementary school, I see a parent
enter the front doors of the school. The bell is about to ring for recess and this mother
manages to catch her son walking by and gives him a hug. Then, soon after, her daughter
is walking down the hallway to be greeted with a smile as well. This mother turns out to
be whom I am waiting for and whom I will refer to as Adina.
Adina has been living in the local community for the past ten years with her
husband whom I will refer to as Adam. They have two children, a nine-year-old daughter
and six-year-old son who are both attending the same school. Adinas husband works full
time while Adina works only 2 days a week, so that she can be the primary caretaker of
the children. Adina is also highly involved in the school, participating as a volunteer in
the classroom, and as the Parent Advisory Council Chair.
Adinas six-year-old son, whom I will refer to as Chuck, was diagnosed with a
genetic slight sloping to moderate bilateral sensorineural hearing loss. Chucks early
diagnosis was actually quite lucky and due to several circumstances that took place.
Chuck was born in December, one month before early screening came into effect for all
newborn babies, so he just missed out on participating in the newly implemented BC
Early Hearing Program (BCEHP). Chucks grandmother, however, worked at a hearing
aid store and had shared with her co-workers about her new baby grandson. One of the
audiologists at the facility was looking for a test subject and offered the opportunity for
Chuck to participate. Adina, who didnt have any concerns about Chucks hearing at the
time since he was still only a few weeks old, agreed and took Chuck in to get tested. The
test came back inconclusive so the audiologist requested that Chuck go to UBC to
undergo further testing for his hearing. After the testing at UBC, they found there was a

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hearing loss, but were not sure why. Adina was told to go to Childrens Hospital where
the BC Early Hearing Program got involved in Chucks case. It was discovered that
Chucks hearing loss was genetic. This of course had come as a total surprise to Adina
and Adam because neither have a hearing loss, which is not uncommon as
approximately 95 per cent of deaf and hard-of-hearing children are born to hearing
parents (Mitchell & Karchmer, 2004. As cited in Jamieson, Zaidman-Zait, & Poon,
2011, p. 111). After looking into their family histories, Adam found he had an aunt a
couple generations older, with hearing loss, however, no etiology was ever given for her
hearing loss.
Adina felt very lucky that Chucks hearing loss was identified so early. If it hadnt
been for the audiologist that was looking for test subjects for his own work, it is uncertain
when Chucks hearing loss would have eventually been identified. Adina wondered what
things would have been like if Chuck was identified at four or five years of age. As
longitudinal studies have established that early identification of deafness (within the first
months of life) when coupled with good quality intervention produces enhanced
linguistic and socio-emotional development outcomes in comparison with late identified
deaf children (Yoshinaga-Itano et al. 1998.; Moeller, 2000; Yoshinaga-Itano, 2003. As
cited in Tattersall & Young, 2006, p. 34), it was a relief that Chuck was identified early. It
is also a relief to his parents, that Chuck does not have any other special needs.
Chuck had to wait until he was three months old before he was fitted for hearing
aids. When he put them on for the first time, he suddenly got quiet and began looking
around more. He was willing to keep them in and luckily, Chuck still doesnt seem to
mind wearing his hearing aids, most of the time. There have been times when hes asked

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to pull them out though because of the hearing aids irritating the eczema in his ears. On
one occasion, he tried to convince Adina that he didnt need his hearing aids anymore.
However Adina showed and explained the audiogram as proof that he did indeed need
them, and Chuck has been fine with the hearing aids since. Adina described Chuck as
being very carefree, laidback, funny, friendly, happy, and not a big fan of sitting still.
Communication for the family has not been a big issue. Adina feels that there
really wasnt much of a difference from when Chucks sister was born three years earlier.
Everyone communicates completely orally/aurally. They tried baby sign and
contemplated using ASL but once they found out that they didnt need to, they decided to
stop. Adina and Adam felt that signing just did not suit them and were relieved to have
the choice of not having to use sign language. Adina did admit though that it was
sometimes hard to understand what Chuck was saying. Interestingly though, Chucks
sister is better at understanding what Chuck is trying to say and would help relay the
message when Adina is unsure of what was said.
In the research revolving around the social effects of Deaf and Hard of Hearing
(D//HH) children and their families, there seems to be an overarching shift in family
focus following the diagnosis towards giving the D/HH child the same opportunities as
any other child. (Jackson, Traub, & Turnbull, 2008, p. 86). Many parents of D/HH
children are also concerned about their other hearing children and expressed the need for
support for the siblings of their children with hearing loss, whose emotional needs were
often overlooked as the parents worked to promote the development of their deaf or hardof-hearing child (Jamison et al, 2011, p. 124). Research shows that there is a general
concern about the potentially harmful effects of deafness on [a mothers] own

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relationships with [the D/HH childs] siblings (Jackson, Traub, & Turnbull, 2008, p. 88).
However, this doesnt seem to be the case for Chucks family. As Adina mentioned, she
doesnt believe that anything has really changed since having Chuck. Moreover, Chucks
sister hasnt displayed any signs for concern. She wondered why Chuck was born with a
hearing loss, and Adina explained that some people just are, just as some people need
glasses. This satisfied the sisters query and things appear to be fine according to Adina.
When Adina found out that Chuck had a hearing loss, it was emotionally hard to
accept at first. It was obviously a different set of emotions than experienced with her first
child. As is normally the case, she never expected the possibility of a hearing loss for her
children. She explained that she was initially a wreck at first and felt like she really
needed to know the specifics on what Chuck could hear so that she could communicate
with him. This was very natural since it seems that obtaining information is an
important part of parental coping and [the] decision-making processes (Zaidman-Zait &
Jamieson, 2004. As cited in Jamieson et al., 2011, p. 123). Once Adina had a greater
understanding of Chucks hearing loss, and understood that she could still communicate
with him orally/aurally, she felt more comfortable. It was Chucks grandmother that
ended up taking the news the hardest though. She tried to ignore the situation, and
continually hoped his hearing would correct itself. This caused further stress on Adina
unfortunately. Things have changed now that Chuck is six, and is doing very well.
From the time of diagnosis, Adina felt that there was a strong support network in
place to help her navigate this completely new world. From the audiologist who
identified the hearing loss, to the staff at BC Childrens Hospital, she felt supported in
getting the information that she needed. The BC Family Hearing Resource Center was the

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major source of support and information for Adina, who also got involved with a baby
group run by the center. There, she was able to meet with other parents who had children
with hearing loss. She had a parent partner who could share tips and suggestions on how
to deal with challenges that might occur, such as hearing aids constantly falling off of
Chucks big floppy ears. After Chuck entered Kindergarten, Adina didnt feel the need
to be involved in any sort of parent or support group. She felt that her needs were being
met through other community and school resources. One of these resources, that Adina
called amazing, was the speech and language pathologist who visited Adina and Chuck
in their home and worked with them on speech. Moreover, having appointments with the
audiologist every six months was a big help as she felt she had developed a great
relationship with their audiologist and who was another major source of information for
her. She also knew that if she ever needed more, the BC Family Hearing Resource Center
had a plethora of information and resources.
Many parents mentioned in focus groups that following school entrythe extent
and nature of their supportive network changed, and they were primarily reliant on their
childrens audiologists and itinerant teachers of the deaf and hard of hearing for
information and emotional support (Jamieson et al., 2011, p. 118) This holds true for
Adina, but it appears that she has chosen to rely primarily on the professional guidance of
the audiologists and itinerant teachers of the D/HH, knowing that if she needs additional
support, she knows where to find it.
Adina mentioned that she is very happy with the school that Chuck is attending
and the resources it provides for him. Unfortunately, many parents of children with
special needs in general have reported concerns about the services available for their

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children in integrated school settings. Issues such as the scarcity of specialized personnel
or programs (Valeo, 2003. As cited in Jamieson et al., 2011, p. 112) are often an issue.
Fortunately though, Chuck meets with an Itinerant teacher for the D/HH, a Speech and
Language Pathologist, and spends approximately five hours a week with an Educational
Assistant. Adina believes that Chucks needs are being addressed and is happy that the
school is capable of providing these resources.
As Reed et al. (2008) found in their research, each [D/HH] student in the aboveaverage group had at least one functional communication network in place. Thus, there
was either good communication between the parents and school personnel or good
communication among school personnel. (p. 497). The way Adina is involved with the
school is proving to be a positive situation. Participating in, and contributing to IEP
meetings, volunteering in class, and acting as the chair of the PAC, Adina is highly
involved many areas of Chucks school environment, and research shows that that bodes
well for Chucks educational success.
Having the opportunity to interview Adina was a very helpful experience for me.
It exposed to me how diverse the needs are for parents of D/HH children. While I was
able to identify many parallels in her experiences with a lot of the research weve read on
D/HH students, there were also a lot of things where Adina and her familys needs
seemed to conflict with some of the views presented in the literature. One of the things
that appear true in Chucks case is that students in general education classrooms tend to
have lesser degrees of hearing loss (Spencer & Marschark, 2010, p. 156). Chuck uses
spoken language as his primary means of communication. I do believe that has helped
him avoid some of the disadvantages that D/HH students can experience in mainstream

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education settings. Spencer and Marschark (2010) wrote that the literature is replete
with reports of negative self-esteem, lack of friendships, and loneliness among students
with hearing loss who are being educated in mainstream or general education settings (p.
158). Jamieson et al. (2011) also suggest that a hearing loss can represent additional
distinctive challenges that influence childrens development in such aspects as selfesteem and identity (p. 123). However, Chuck is not having difficulty building
friendships and is not lacking self-esteem, according to Adina. This can possibly be
attributed to the fact that his hearing loss is not severe and his hearing aids are helping
him hear and participate in most of the conversations he is a part of. Secondly, Chucks
main group of friends have known each other for several years now, many moving from
pre-school to elementary school together. In that way, Chuck has been fortunate to
maintain his friendships with his hearing peers as peer relationships are centrally
important in social-emotional development (Stinson & Antia, 1999. As cited in Jamieson
et al., 2011, p. 113).
As most students with mild and moderate hearing loss are more likely to be in
general education classrooms (Reed et al., 2008, p. 487), parents of D/HH children
emphasized the need for the children themselves to develop self-advocacy skills to be
able to explain and request communication accommodations (Jamieson et al., 2011, p.
121). This is something that makes Adina very proud of Chuck, as he is not shy about
explaining to others what his hearing aids are and why he wears them. He also stands up
for himself when he has trouble hearing and seeks the additional help he requires. An
example is his love for the FM system that he has utilized since preschool, and his

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request for its continued use. These are important skills for Chuck to maintain to ensure
he is hearing optimally in school.
Not only do students require strong advocacy skills, but so too do parents,
especially when dealing with unknowledgeable schools systems (Jamieson et al., 2011, p.
120). Luckily, Chuck is at a good school that is providing him with all the school factors
that promote success for students with disabilities includ[ing] administrative support,
adequate resources, [and] adequate scheduled time for teachers to plan with special
educators (Reed et al., 2008, p. 486). As mentioned, Chucks school has been very
proactive in providing all education supports to meet Chucks needs. Adina has had no
reason to have to ask for anything that she felt was lacking in relation to Chucks learning
needs. However, if the situation did arise, Adina is well informed and willing to advocate
for Chuck and demand whatever might be needed to ensure his full access in the
classroom and the school environment in general. Being the PAC Chair has helped put
her in the position to bring awareness and advocacy for any issues that concern the
learning environment for Chuck and every other student in the school.
Adinas involvement at the school is another factor as to why I believe Chuck is
doing so well. Grolnick and Slowiaczek (1994. As cited in Jamieson et al., 2011) believe
that parental involvement is a complex construct encompassing many parental behaviors
and attitudes such as participating in school activities, helping with school work at home,
exposing the child to intellectually stimulating activities, and staying informed about the
childs schooling (p. 112). In addition, parental involvement is seen by Jamieson et al.
(2011) as a key factor in the protection, nurturance, and socialization of children, with
important implications for developmental outcomes (p. 111). Luckner and Muir (2001.

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As cited in Reed, Antia, & Kreimeyer, 2008), too, write that a variable contributing to the
success of [D/HH] students [is] good family support (p. 486).
Adinas communication and involvement in Chucks education, combined with
the ongoing support of itinerant teachers of the deaf and hard of hearing and audiologists
is critical in arranging accommodations for and meeting the needs of children with
hearing loss and their families (Jamieson et al., 2011, p. 125). For Adina and the school
based resource team, things have been working well, and communication has been
strong, thereby ensuring that Chuck is receiving a good educational experience in this
setting. It is the importance of parental involvement and strong communication between
all those involved on Chucks education team that I believe give comfort to Adina to
relax and avoid the elevated levels of parenting stress surrounding deafness often found
in hearing parents of deaf children (Jamieson et al., 2011, p. 111). I think it gives her the
comfort level to carry on without the further supports of D/HH parent groups or other
programs she was once involved with.
Early identification is clearly another factor in Chucks educational success.
Research has suggested that early identification has benefits for both parent and child,
for example, in decreasing parental stress, improving parent-child bonding and in
bringing about quicker resolution of parental grief (Yoshinaga-Itano & Apuzzo, 1998;
Yoshinaga-Itano, 2003. As cited in Tattersall & Young, 2006, p. 34). Early identification
is vital in giving D/HH children the opportunity to a normal childhood, and minimizing
catch-up time and learning delays. As a result of his early identification, Chuck received
hearing aids and Speech and Language therapy from a very early age, which has certainly
helped him maintain grade level achievements.

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Currently, Adina doesnt feel as if anything has changed much in her life from
hearing child one, to hard-of-hearing child two. However, she is aware that each
developmental stage in childhood represents a new set of relevancies for parents to
understand (Jamieson et al., 2011, p. 123). Chuck is still very young, and Adina realizes
that much can still change in his experience as a hard-of-hearing individual. It will be
interesting to see if Adina seeks out additional information about future-oriented aspects
of [her] childs development, including preparing for upcoming changes in [her] childs
life, such as the transition between school and postsecondary and career opportunities for
persons who are deaf or hard of hearing (Jamieson et al., 2011, p. 121).
After the early days of information seeking when Chuck was first
identified, Adina doesnt have too many additional needs anymore. As
a mother of a hard-of-hearing son, she only seeks that her son is
getting the additional attention and adaptations required to support his
learning. The fact that Chuck was identified early and has been
working with specialists throughout his childhood, seems to have given
Adina a calmness, knowing that her son is being taken care of. The
relationship she holds in keeping open communication with those
supporting Chuck also allows her to take a more laid back approach, as
she trusts those who are aiding his learning. Moreover, I believe that
because Chucks hearing loss is not in the severe to profound range, it
has allowed the whole family to carry on, without having to change and
adapt to placing Chucks hearing needs at the center of the family.

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Adina left me with some advice on what she believes have helped her find success
in her experiences. She advised that simply relating to the child on his/her level would
make a world of a difference. Kids are all different, whether they have normal hearing or
hearing loss. Its all about how we adapt to their needs and requirements. And most
importantly, as an Itinerant teacher of the deaf and hard-of-hearing, its a great position in
that you get to work with the same student over multiple years. As a result of this, youll
get to know their needs in the classroom. It is important to make sure that classroom
teachers are made aware of the needs to accommodate D/HH students when each new
school year begins.
This was a particularly eye-opening and encouraging interview to be a part of.
This opportunity provided me a better picture of what it might be like when we work with
deaf or hard of hearing students and their families in the field of deaf education. In
addition, I have also had the opportunity to see the situation from the parent/guardians
perspective. I have learned sensitivity in approaching a topic that might have emotional
connections for the parent/guardian. However, I have also learned the amazing strength
that parents/guardians can draw from, especially when the right supports are in place.
Finally, through this interview assignment, I have gained the insight to help me be more
understanding, empathetic and confident in preparing for a future career as a teacher of
the deaf and hard of hearing. I know that the more information I have about how to meet
the learning and social/emotional needs of this special student population, I will have a
hand in molding confident and successful individuals who will face any future challenges
with the same tools and strategies as any of their hearing peers.

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References
Jackson, C. W., Traub, R. J., & Turnbull, A. P. (2008). Parents Experiences With
Childhood Deafness. Communication Disorders Quarterly, 29(1), 82-98.
Jamieson, J. R., Zaidman-Zait, A., & Poon, B. (2011). Family Support Needs as
Perceived by Parents of Preadolescents and Adolescents Who are Deaf or
Hard of Hearing. Deafness & Education International, 13(3), 110-130.
Reed, S., Antia, S. D., & Kreimeyer, K. H. (2008). Academic Status of Deaf and Hard-ofHearing Students in Public Schools: Student, Home, and Service Facilitators
and Detractors. Journal of Deaf Studies and Deaf Education, 13(4), 485-502.
Spencer, P. E. & Marschark, M. (2010). Evidence-Based Practice in Educating Deaf and
Hard-of-Hearing Students. New York, NY: Oxford University Press.
Tattersall, H., & Young, A. (2006). Deaf children identified through newborn hearing
screening: parents experiences of the diagnostic process. Child: Care, Health
& Development, 32(1), 33-45.

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