FAQs

 

A reality with any parent journey is the number of questions that we all have at one time or another. Initially the complexity and volume of these can seem overwhelming. Having many questions is a great place to start; through working through your new reality and the choice options that you face for your child, you are being an active, involved parent! This is a key to your child thriving. (or something like that)

The HI HOPES website address some questions that are often asked. You can view them HERE.

Our team has put together some additional questions which we have all had ourselves, and see other families asking often. We hope you find the answers and various links helpful.


1

Q: My child has recently been identified, and I’m feeling a huge mix of emotions, guilt being one of them. Is this normal?

A:  “Loss. It’s a simple four-lettered word that is one of our common companions through life. But we don’t talk about it very often. Like a silent conspiracy, we seem to have an unspoken agreement with others not to talk about our losses. Yet with every loss comes the potential for change, growth, new insights, understanding and refinement – all positive descriptions and words of hope. But they are often in the future, and we fail to see that far ahead when we are in the midst of our grief.” (Recovering from losses in life – H. Norman Wright) The grief that accompanies the identification that your child has a hearing loss, or other special needs, is a very real process.  The loss may be as obvious as the literal loss of your child’s hearing, to many fringe losses that may be just as impacting, including the loss of a career, if this was something you needed to give up as a consequence, the loss of finance, the loss of your home (as in our case where we needed to move closer to audiology services), the loss of friends and importantly, the loss of dreams…all the ways you pictured how life would be, even possibly before your kids were even conceived. It is helpful to acknowledge these things, write them down if need be, and allow yourself to grieve each and every single one. The 5 recognized stages of grief surrounding any circumstance are:

  • Denial and isolation. You may have noticed your child not responding to sound, but this is too much for you to accept at this point, so you try to ignore it.
  • Anger. Anger with your doctor, your audiologist, your spouse. Anger with God.
  • This is a time of “what if’s” – “What if I hadn’t listened to that doctor who had said I was being paranoid?” One may also find oneself trying to strike a deal with God to avoid the inevitable.
  • Sadness and loneliness predominate here. Sadness for the loss of your “normal”, and for all the things that may need changing in your life. Grandparents tend to experience double sadness. They are sad for their child’s grief of having their grandchild identified, and they are sad themselves for having a deaf grandchild.
  • Acceptance. Reaching this stage takes a different amount of time for different people. The things that helped me reach the place of acceptance included finding a mentor -someone who understood. Meeting and making friends with deaf adults was key here, as helped me to see that all was going to be okay. Realising that my life is not mine to control, and that the future was laced with a promise that the plans for my life were that of hope, has been my constant source of strength.

(Dr Bianca Birdsey)


2

Q: There are so many terms thrown around, and frankly, they confuse me. When is my child “hard of hearing”? When do I call them “deaf”? What do these terms actually mean?

A: The World Federation of the Deaf and the International Federation of Hard of Hearing People, released a memorandum in 2013 acknowledging the terms “Deaf” and “Hard of Hearing” as the appropriate terminology to use for people with a hearing loss. “Hearing Impaired” has no longer been deemed an appropriate or acceptable term to use. The terms “hard of hearing” and “deaf” are used and distinguished based on a variety of factors. An audiological definition, will generally refer to people with a mild to moderate hearing loss, as being hard of hearing, as opposed to being deaf. An interesting distinction that is sometimes made, is with reference to the development of a spoken language in a person with a hearing loss, regardless of their hearing level, assuming that children with more residual hearing are more likely to acquire a spoken language.  This distinction is less objective if one considers that two children with identical hearing losses could be differentially referred to as hard of hearing and deaf, simply because of their ability to speak, especially when considering that other factors, that are unrelated to hearing per se, such as lipreading skills, may play a role. (Raising and Educating a Deaf Child, Marc Marschark, Chapter two, Practical Aspects of Being Deaf)

(Dr Bianca Birdsey)


3

Q: If I teach my child to sign, will it hinder their learning to speak?

A: That is such an important question, and one that almost each parent thinks about or has heard said at some time or another.

The first thing we need to know is that language and speech are not the same thing, language is situated in various parts of the brain and how we express that language, can come out as spoken language (Zulu, Xhosa, French or English) or signed language (South African Sign Language, American Sign Language or Korean Sign Language for example). Speech is simply one mode of language, a way of expressing and receiving that which is thought. A signed language is yet another mode.

Language is acquired in the first 3 years of life and is one of the foundations for all other development, such as cognitive development, social and emotional development as well as speech among others. These three years are referred to as the ‘critical period’ for language development and all research shows that these are the primary years in which children need to acquire language.

In the 1st year of life the child is a ‘sponge’ for language – whichever language it is – and acquires it naturally. As a child is exposed to the language and develops receptive understanding (through her ears or eyes or both) she will then start to express herself in the language that she has been exposed to. The essential question to ensure you consider, is whether your child’s expressive and receptive language are following the typical chronological milestones, whether she signs or speaks. What’s of primary importance during this critical period is that we feed the child’s brain with language that they are able to access, language that will help them to build concepts, language to think in, and ultimately to express. By watching your child carefully and having frequent language development assessments done, you will be able to assess which mode/modes of acquiring language best match your individual child.

Research shows that a bilingual child is cognitively more advanced than a monolingual child. In bilingual settings, research also shows that the development of one language makes it easier to learn a second language. A child in family where there is English and Zulu being used, will not see the Zulu development hinder the development of English. The same is true for SASL and English.

There is much research that shows that a sign language does not hinder the development of an oral language, but can actually facilitate it. Two interesting videos relating to this question can be found below.

Laura Pettito with Sanjay Gupta – What science has learnt about early language development

Cognitive Advantages of Bilingualism

(Professor Claudine Storbeck, director of CFDS and HI HOPES)


4

Q: How do I know that I am making the right choices for my child?

A: Every single parent ponders this every day, whether it’s about the way in which we discipline our child, what or how much we feed them or as in the case of hearing loss, the wide range of issues from amplification to communication, which professionals to access, schooling options etc.

It’s a good idea to think of this issue of making choices rather as a winding and ‘interesting’ journey of getting to know your child and how she best communicates with you. As you become an expert observer of your child and how she expresses herself during the good, the bad and the ugly times you start seeing what comes naturally to her, for now. What we are looking for is what the right ‘match’ is for her at this particular time in her development, and believe me it can and probably will, change a few times; it’s a journey remember! The first years of a child’s life is their “diagnostic period”. It’s the time where parents observe their child, interact with their child and try various things. Through carefully following your child’s lead and listening intuitively to your gut, you will see what choice options work best for your child.

(Professor Claudine Storbeck, director of CFDS and HI HOPES)


5

Q: I want my child to be in a main stream school. Are there any things that I can do to ensure that their needs are met in spite of being in an environment that does not specifically cater for hard of hearing children?

A: Suggested assistance for children with a hearing loss who are mainstreamed include:

  • Sign language interpreter if SL is being used by the child
  • A note taker – trained in taking notes on the lesson, affording the child the opportunity to watch the teacher/visuals without the interruption of glancing down at a page or book to write notes.
  • If video materials are used, have them captioned.
  • Group work involving a smaller group for the Deaf/HOH child
  • Make lesson notes and content available ahead of time for the student to read p on and familiarise himself with
  • FM systems to allow for the teacher’s voice to be preferentially amplified
  • Allow the child to sit in front of their class or at least ensure that they have an unhindered view of the teacher or visual tool (blackboard/whiteboard/projector screen)
  • Have the teachers involved educated on the needs of the child including training on teaching skills needed to teach children with a hearing loss (including simple adjustments such as not speaking into the board whilst writing.)
  • Real- time text is becoming more popular, and used mostly for older children whose literacy skills are excellent. Here a third party types out what the teacher is saying, as the teacher is speaking, allowing the text to be displayed on a screen that the student can easily see.
  • Addressing the class room acoustics with the school and experts
  • Minimising classroom glare that could hinder the student’s view of the teacher or board.
  • Extra tutoring/lessons to ensure that concepts are grasped and possibly a “safer” environment where students feel less self-conscious to ask questions.
  • Fostering self-advocacy skills to encourage students to ask up if they need something repeated or explained.
  • Fostering an environment where the student feels supported, and where he/she can freely express any difficulties experienced.

(Raising and Educating a Deaf Child, Marc Marschark, Chapter Six; Going to School)

(Dr Bianca Birdsey)


6

Q: My child has had multiple ear infections and has been fitted with grommets. He/she is now 2 year old. I’ve had her hearing tested which showed a mild hearing loss. Considering that this may be temporary, should I be worried about the affect on language development?

A: A mild hearing loss has an effect on language development. Children with mild hearing losses due to ear infections need specific communication strategies like looking directly at the child when speaking and stating the main points clearly.

The hearing loss might be temporary and typical thresholds be obtained once the infection clears. However, a hearing test needs to be done a few weeks after the infection clears to make sure this is the case.

It is important to monitor your child’s language development, as the child might have further infections that do not have any symptoms and that you are not aware of. Periodic language and auditory assessments should be scheduled (12 to 18 month intervals for language and 6 monthly for hearing tests to make sure that infections are not causing further hearing loss).

(Selvarani Moodley, HI HOPES Audiologist)


7

 

Q: My child has been fitted with a Cochlear Implant. How long will it be before he/she learns to speak?

A: For the best case scenario, it takes about 9 months from the time a cochlear implant is used consistently to the time a child is able to identify and discriminate  sounds. The process is first awareness, identification and then discrimination of sounds. The child then needs to learn and practice specific words that he can produce. This can take a further 6 to 9 months. This is assuming that the child has access to sound with the cochlear implant and that there is regular and consistent therapy.

However, factors such as age of implantation, additional special needs, as well as unknown factors, can delay this process significantly. Not all children that have a cochlear implant develop speech. While tests are done to determine whether a child will benefit from a cochlear implant and whether sound is able to be processed by the auditory nerve and the brain, the actual outcome of the implant cannot be guaranteed. Some children have minimal benefit and are able to access only environmental sounds with the implant and some children actually are able to access sounds that are within the speech banana.

To optimize the process of sound discrimination and consequent speech development, during the interim of the cochlear implant fitting and the child attending therapy, communication strategies are needed. This might be in the form of gestures or signing (if you are comfortable with using signs). Research has shown that for children that have a language base (e.g. Sign Language) on which to develop  the sound system the process from sound recognition to speech production may be  shorter. This is because the signing system can be used to teach the child and enable the recognition of sounds. In time, as speech develops, the child may choose to drop the signs.

The importance of language development and ensuring that any delays in language development are not widened while the brain adjusts to hearing through the cochlear implant, language stimulation and development is very important. An amplification device, whether hearing aid or cochlear implant, enables the child to access sound. It does not give the child language, which is why early intervention that focuses on language development is key.

The statistic from Raising and Educating a Deaf Child, by Marc Marschark, suggests that 65% of children with cochlear implants develop intelligible speech. With improvements in technology, new insights in speech therapy, and evidence of benefit from early exposure to sign language, this number may increase.

Also see the DCIP team website for further common CI related questions including the themes of the process, possible outcomes and financial implications.

(Selvarani Moodley, HI HOPES Audiologist, Dr Bianca Birdsey)


8

Q: What can I expect from our Cochlear Implant “switch on”?

A: This depends on the age of the child and whether there was access to sound before the implant e.g. Is this an acquired loss?

Different children react in different ways. Babies might show a response to sound by widening their eyes, children might cry or just becoming very still with a marked change in facial expression. Some children do not show any reaction at all.

The audiologist will map sounds at a certain level, ask you to keep the level for a week and note reactions and then change the levels the following week. Noting whether a child responds to sounds is a long process and requires the brain to start hearing and processing auditory information. Do not get discouraged if the child does not show any response immediately, carry on with the programming as recommended by the audiologist and continue with language stimulation and auditory exercises. As the child gets used to hearing sounds you might see a change in reaction to sounds.

(Selvarani Moodley, HI HOPES Audiologist)


9

Q: I have chosen oral communication for my hard of hearing child, and since embracing our journey, find myself meeting deaf adults that use sign language. Sign language is very foreign to me, so although I really want to, I feel embarrassed to go up to deaf adults and initiate a conversation. How can I make things less awkward?

A: It’s perfectly okay to feel awkward but don’t let that stop you! Everyone knows universal gestures for “Hi!” Start with that. A smile is universal too!

Use pen and paper or your phone to text. No need to apologize for not knowing sign language–what’s more important is an openness and willingness to communicate, no matter what it takes.

If you learn to finger spell the alphabet–that’s a great start because you can fingerspell anything.

(Karen Putz, Author, Hands and Voices and is Deaf herself)


10

Q: What does the future hold for my child?

A: The future. I often wished for that crystal ball, especially in the beginning of my journey. Will they get married? Have babies? Finish school? Be independent? Crazy questions to ask, I see that now, but were real, pressing questions that clouded my “happy ending” idea when my world was turned upside down with my girls’ identification. Getting to know deaf adults and reading about deaf adults internationally, turned my fear on its head. I realized that with love and intervention, the future was not as daunting as I had thought it could be…in fact…I saw that it could be quite exciting and quite wonderful. Love is key, acceptance is important, intervention essential and advocacy will become part of who you are.  The good news is you don’t need to be alone on your journey, THRIVE and other parents like you, are here to cheer you on. Hearing is not a ticket to problem free kids, there are so many other factors that determine their futures, one step at a time, one day, one decision at a time with the hope that it can indeed, be wonderful.  And I love this quote: “’What if I fall?’ ‘Oh darling, what if you fly?”

Nice to meet you is a heartwarming and reassuring must watch video

(Dr Bianca Birdsey)


11

Q: My child has recently been fitted with hearing aids. My audiologist has encouraged that he/she wear them during all waking hours of the day. I can barely get him/her to keep them in for two minutes, and finding this extremely stressful. Any tips?

A: Adjusting to hearing aids can be a stressful time for both you and your child, especially because of the pressure you may feel from family members and professionals. Having a positive experience is important for long term acceptance. If you are certain that the fit of the moulds is correct and that the audiologist is confident about the aid’s settings, allow your child to wear their aids for a few minutes and then remove them for a break. It’s important that your child understands that you do the removing of the aids. Extend the time that the aids are in, by a few minutes at a time over the first few days, giving a few minutes break in between. Create a log book of the time in and out daily, so that you can document your progress. If your child starts fussing, distract him by taking him outside to look for a bird, or showing her a book. Develop positive behaviour to the aids. Greet them excitedly in the morning, thanks them for their help and kiss them goodnight at bed time. Ask your audiologist for a dummy pair to adorn their favourite teddy with, and take teddy through the process of taking them off at night and putting them back on in the morning and after nap times.  Make it a family affair. Use air dry clay to make hearing aid look-alikes for various family members so that the child can see that this can be a fun process for all. Look for fun clothing clips or exciting stickers, that your child can be involved with choosing and as a result, take more ownership of his aids.  Embellish the process with lots of praise and even the occasional reward.

Realise that this is going to take time, will likely be quite stressful, will initially require intensive dedicated effort, but you will get it right in the end. If you have further concerns, talk to your audiologist, interventionist or parent mentor for further advice.

The Mary Woolley approach to assisting children to keep their hearing aids on.

(Dr Bianca Birdsey)


12

Q: What if I don’t agree with or get along with my audiologist, speech therapist, early interventionist, parent mentor? Is it okay to say so or ask for a second opinion? 

A: I actually think a 2nd opinion is always a good thing to consider and never to feel guilty about, whether you like or get along with your therapist/ audiologist/ interventionist or not. An informed and empowered parent is the best type of parent for your child, so always make sure you know what you like and don’t like through personally engaging with the issues as opposed to just taking someone’s word for it. I always think it’s better to have asked the difficult questions and challenged the answers you felt unsure about, than sitting with a whole bag of “what ifs” 5 or 10 years later.

(Professor Claudine Storbeck, director of CFDS and HI HOPES)


13

Q: I’ve been told that my child is “70% deaf” in one ear and “50% deaf” in the other ear. I’ve then heard terms like “moderate”, “severe” and “profound” hearing levels used also. How do they relate to each other?

A: Hearing Levels are correctly described as follows:

Decibels (dB – the unit of sound) Terminology Used to describe the hearing loss
28 – 40 dB Mild
41 – 55 dB Moderate
56 – 70 dB Moderately Severe
71-90 dB Severe
91 and above Profound

See HERE for a closer look at the Audiogram.

If the hearing loss affects one ear only, the term used is “Unilateral”. If the hearing loss affects both ears, the term used is “Bilateral”.

Describing a hearing loss in percentages of hearing ability is not the standard practice, and rather non – specific, especially when considering that the hearing level can differ depending on the various frequencies in a single ear. Children may have access to low frequency sounds at a lower hearing level, but their high frequencies may have a hearing level of 95 dB for example. They may respond to some sounds and not to others, making the picture if what they can or cannot hear, very confusing. Plotting your child’s hearing levels for various frequencies (audiogram) onto a “speech banana” will give you a better appreciation of what sounds they can hear. Accessing the speech sounds as depicted on the audiogram, is the ultimate goal of amplification, as even a few inaccessible sounds can greatly distort the spoken language that your child hears, which has significant implications to learning and accessing information, particularly in an oral environment.

The real sounds of hearing loss

The best hearing loss simulations

(Dr Bianca Birdsey)


14

Q: I want my child to know that I love him/her. How do I best show that?

A: If you choose one goal, one desired outcome, may it be that your child knows that he/she is loved just the way that they are. I remember the night before taking my girls for their ABR test. After putting them down for the night, I walked out of their bedroom, and said out loud with great angst, “How am I supposed to tell them that I love them if they cannot hear?” In my heart I heard the answer, “You are going to have to show them.” Actions speak louder than words, and in the case of parenting deaf children, it’s who we are and how we make ourselves available to them that screams love. Accepting your child for who he or she is, is a start, and then pull out all the stops to get communicating. Once you are able to communicate the language around your love for them and all the affirming language around how special and precious they are, discussing your love for them will become much easier. Once you are able to do this, do it often. There are so many other ways to show love, even when our vocab list fails us; a smile, a hug, a butterfly kiss. Spend time together, time where you are truly present. Read books together, lie under a tree together, tickle. Let them know that you enjoy being with them. Fight for them, teach them how to fight for themselves. Set boundaries that show them that they are worth shepherding.  Take interest in what they are interested in, take interest in their friends, and show them that they can trust you. Bite the bullet and embrace the tough times.  Help them with their homework, teach them how to keep themselves safe. Remind them that they were made with a plan and for a purpose. Let them know that you are proud of them. Watch your facial expressions….they read these like a book. Yes, you may be tired, but be mindful of your expression as they walk into the room. Be good to yourself. Parenting deaf kids can have its hard times. Take time for yourself. A rested, topped up parent, will find it easier to be patient and exude warmth.  Get good at saying sorry, and be sure to forgive yourself when you feel you’ve fallen short. Love is not a feeling, but an action…one that says, “You are you, and that I celebrate.”

(Dr Bianca Birdsey)