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Here are some links if you want to read or watch to learn more:

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Here are some links if you want to read or watch to learn more:

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Here are some links if you want to read or watch to learn more:

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Here are some links if you want to read or watch to learn more:

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Under Section. 300.8 (c) (5): Hearing impairment means an impairment in hearing, whether permanent or fluctuating, that adversely affects a child’s educational performance but that is not included under the definition of deafness in this section.

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We have acronyms that you may see often interacted with hearing impairment are:
- D/HOH - Deaf/Hard of Hearing
- CODA - Child of Deaf Adult
- HA - Hearing Aids
- CI- Cochlear Implant
- D/B - Deaf/Blind
- ASL - American Sign Language

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Muffling of speech and other sounds

Difficulty understanding words, especially against background noise or in a crowd

Trouble hearing consonants

Frequently asking others to speak more slowly, clearly and loudly

Needing to turn up the volume of the television or radio

Withdrawal from conversations

Avoidance of some social settings

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Regarding in the school settings, how can you see if your child/student is struggling with hearing loss?

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Regarding in the school settings, how can you see if your child/student is struggling with hearing loss?

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Having limited or unclear speech

Not following directions or paying attention

Hearing only parts of a conversation; asking for information to be repeated (Can't keep up with everyone!)

Not being able to hear everyday sounds, like a school bell or morning announcements

Learning struggles

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What are some ways we can identify hearing loss?

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What are some ways we can identify hearing loss?

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Physical exam. Your doctor will look in your ear for possible causes of your hearing loss, such as earwax or inflammation from an infection.

General screening tests. Your doctor may use the whisper test, asking you to cover one ear at a time to see how well you hear words spoken at various volumes and how you respond to other sounds. Its accuracy can be limited.

App-based hearing tests. Mobile apps are available that you can use by yourself on your tablet to screen for moderate hearing loss.

Tuning fork tests. Tuning forks are two-pronged, metal instruments that produce sounds when struck. Simple tests with tuning forks can help your doctor detect hearing loss. This evaluation may also reveal where in your ear the damage has occurred.

Audiometer tests. During these more-thorough tests conducted by an audiologist, you wear earphones and hear sounds and words directed to each ear. Each tone is repeated at faint levels to find the quietest sound you can hear.

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Go to an audiologist! To be able to confirm for real, for real.... go to them. They will be able to help you and guide you properly if you come to a diagnosis of a hearing loss!

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1. Determine the student’s needs: academics AND functional performance.
2. Does the hearing loss cause an adverse effect to education (performance in the classroom; achievement)?
3. What services (teaching skills) and supports (ensuring access) are needed for the student to receive equal benefit of education in the general education setting?

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Some accommodations for the deaf and hard of hearing would be:
- Interpreters
- Speech to Text Services
- Assistive Technology Systems
- Note takers
- Captioned media: basically everything!
- Testing Accommodations
- Remote Services
For the D/HOH, there's tons of resources out here to help them!

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How do we help D/HOH students through behavioral management?

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How do we help D/HOH students through behavioral management?

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The habilitation and management of hearing loss among young children is complex, and the addition of disruptive behavior could further complicate language and social development.

Assessment and reporting of hearing loss among children are routine and relatively standardized; however, clinical assessment of disruptive behavioral disorders among children within the hearing health care setting lacks standardization in this population and may be complicated by a lack of experience in the use of these behavior assessment tools and the significance of their findings.

Getting in touch with your students/child is so important to being able to understand them.
They will struggle with behavioral issues especially if they are in the adaptation stage to understanding how the world works.

When they are in school, they face a huge amount of pressure to be like everyone else. (Comes from experience).

We as teachers, can guide them by creating small groups, by involving them. Ask them if they need help! Ask them if they want to learn ASL!
Be kind to them. Attempt to communicate with them, in the end they will find a way to let you know.

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Introduce a deaf community to them and their parents. This way everyone can get involved! You too!

Increase the accessibility to ASL. Whether they want to learn or not, have that resource out and available for them and their families. You never know who wants to end up getting involved.

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https://www.ocecd.org/HearingImpairmentResources.aspx

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A hearing impairment is defined by the Individuals with Disabilities Education Act (IDEA) as "an impairment in hearing, whether permanent or fluctuating, that adversely affects a child's educational performance but that is not included under the definition of deafness. Deafness is defined as: a hearing impairment that is so severe that the child is impaired in processing linguistic information through hearing, with or without amplification, that adversely affects a child's educational performance

Types of Hearing Loss

There are four basic types of hearing loss:

1. Conductive hearing loss
Conductive hearing loss occurs when sound waves are not transmitted effectively to the inner ear because of some interference in:

The external ear canal;

The mobility of the eardrum which can be caused by the accumulation of fluid in the eustachian tube which connects the middle ear to the back of the throat;

The three tiny bones inside the middle ear;

The middle-ear cavity;

The openings into the inner ear;

The eustachian tube;

Modern techniques make it possible to cure or to improve many cases involving problems with the outer or middle ear. Individuals with conductive hearing loss can often benefit greatly from medical intervention and/or the use of a hearing aid.

2. Sensorineural hearing loss
With the sensorineural hearing loss, the damage lies in the inner ear, the auditory nerve, or both.

The cochlear, which is the innermost portion of the ear, has approximately 30,000 hearing nerve endings (hair cells). The hair cells in the large end of the cochlea respond to very high-pitched sounds, and those in the small end (and throughout much of the rest of the cochlea) respond to low-pitched sounds. These hair cells, and the nerve that connects them to the brain, are susceptible to damage from a variety of causes.

When there is damage to any part of the cochlea, the term "sensory" hearing loss is used.

"Neural" hearing loss is the correct term to use when the damage is to the auditory nerve, anywhere between its fibers at the base of the hair cells and the relay stations in the brain.

3. Central hearing loss
In central hearing loss, the problem lies in the central nervous system, at some point within the brain. Comprehending speech is a complex task. Some people can hear volume perfectly well, but have trouble understanding what is being said. Although information about central hearing loss is accumulating, it remains somewhat a mystery in otology (the medical specialty of ear medicine and surgery).

A condition called central auditory processing disorder frequently leads people to think they have hearing loss when their hearing sensitivity is actually normal. Despite the fact that this problem is extremely common and present in many highly successful people, it can present challenges in a classroom environment.

4. Mixed hearing loss
A mixed hearing loss occurs when an individual has both a conductive and sensorineural hearing loss in the same ear.

Functional Deafness

This type of hearing loss is a result of perceptual deficits rather than a physiological cause, and can be the result of an emotional trauma. Hearing Loss in One Ear (Unilateral Hearing Loss)

A unilateral hearing loss refers to hearing loss in one ear only which can range from mild to total hearing loss in that ear. In the case of a unilateral hearing loss, a child can hear well in most situations. Problems may be experienced in the following instances, however:

Hearing sounds directed at the affected ear

Localizing the source of sounds that are hear

Understanding speech in a noisy background (this is more problematic if the good ear is close to the noise.

A unilateral hearing loss can impact a child's school performance. There is research that shows that 25%-35% of children with unilateral hearing loss are a risk for failing a grade in school. They may show a limited attention span, be distractible or experience fatigue as the school day progresses. A child's teacher should always be made aware of a unilateral hearing loss so that necessary accommodations can be made and the child's performance can be monitored.

Modes of Communication

Communication access is the foundation for learning. Students with hearing impairment will develop their mode of communication within their family unit. This may be a manual form of communication such as American Sign Language or a variant of oral communication. Both require training and support for the parents and child. According to the Operating Standards for Ohio's Schools Serving Students with Disabilities, parents of students with hearing impairments can choose their child's mode of communication for educational purposes. This decision is included in the child's Individual Education Program and becomes the language of instruction for that student.

There are two main communication modes and the decision regarding the use of each is based on a number of factors including degree of hearing loss, age of the onset of the hearing loss, parental choices, and learning styles.

Strategies available to Deaf/hard of hearing students can be broken down into two general categories.

Sign Language

Speech/Oral Communication

Signed speech can include:

ASL (American Sign Language)

is a communication system that incorporates the use of the hands, arms, body and face to produce a language with its own grammar and linguistic rules.

MCE (Manually Coded English)

is a mixed language system used in communication between Deaf and hearing individuals where some signs may be compromised when there is no ASL equivalent to the spoken word or vice versa. It was developed to code English word order, syntax and grammar. While it was developed to ease the transition from written English to speech, it does not keep up with spoke English as ASL does.

Cued Speech

A system of phonemically-based handshapes used to supplement speechreading. It uses eight handshapes to represent consonants and four positions on the face to signify vowels to aid speechreaders in distinguishing between words that look the same on the lips such as pat and mat.

Speech/Oral Communication

This refers to the use of speechreading and auditory cues for English communication. For Deaf individuals who have very little auditory ability, oral communication requires extensive training and speech therapy. Only 30-40% of all speech sounds can be read on the lips and a number of common conditions impede the process of speechreading, including: poor lighting, use of unfamiliar names or words, rapid speech, overlapping speakers, etc.

Every student has his/her own unique needs. Many hard of hearing students will rely on speech/oral and text communication with the assistance of a hearing aid and/or other assistive technology and through the use of speechreading. These individuals may or may not choose sign language as their mode of communication. Students with moderate hearing loss (65-95 decibels) or a profound loss (over 95 decibels) are more likely to use sign language, although some individuals with moderate and profound loss will choose oral communication. There are schools for the Deaf that focus on oral communication. Two such schools in Ohio are Ohio Valley Voices and St. Rita's School for the Deaf.

Hearing Aids

Hearing aids: Proper functioning of hearing aids is addressed in Title 34, Code of Federal Regulations: Sec. 300.303 Proper functioning of hearing aids which reads: "Each public agency shall ensure that the hearing aids worn in school by children with hearing impairments, including deafness, are functioning properly. (Authority: 20 U.S.C. 1412(a)(1))" Local school district do not usually provide hearing aids for students, however, they bear the responsibility of ensuring that a child's hearing aids are in proper functioning order.

Classroom Supports For Students With Hearing Impairments

1. Interpreter Services
Ohio's deaf and hard of hearing students often require the services of a qualified educational interpreter to gain access to and benefit from participation in the general education curriculum. Under IDEA, parents have the right to choose a child's mode of communication and the school has a responsibility to address that need. Parents may request American Sign Language, Manually Coded English or an oral program for their child. If interpreter services are required to support a student in classes or in extracurricular activities sponsored by the school district, the district is responsible for providing the services.

"Interpreter services includes assisting learners with hearing impairments and deaf learners by providing interpretation in English and American Sign Language, transliteration in a manual form of coded English or other coded forms of English." [Sec. 3301-51-01(JJ)(h) Operating Standard for Ohio's Schools Serving Student To find out about interpreter services and requirements for interpreters, parents may contact the Interpreter and Sign Language Resource Center, Ohio School for the Deaf at 614-995-1566.

2. Assistive Technologies in the Classroom
A range of assistive technologies can be used in the classroom to support the education of students with hearing impairments.

Other technologies used in the classroom would be identified by the IEP team and can include:

Captioned Media

Captioned Media is a free service funded by the U.S. Department of Education that loans captioned videos and DVD's to deaf and hard of hearing individuals, their families and teachers, interpreters and anyone who works with deaf or hard of hearing persons. There are no charges for postage. A catalog of available items is available on the internet of by catalog. The user must register and request an account to participate.

The Sound Field System

A sound field system consists of a microphone that the teacher uses that is connected to speakers mounted in the room to help students hear the teacher above the ambient classroom noise. They can be important for some students with mild hearing impairments and in improving the achievement of other children in the classroom. Some research has been done regarding sound field systems. Following is the introduction to Sound Field Systems by two researchers.

Rehabilitation Engineering Research on Hearing Enhancement

Classroom sound-field systems are basically Public Address (PA) systems with the inclusion of a wireless microphone. As the teacher talks into the microphone his/her voice is transmitted to a specialized receiver/amplifier that is connected to, or physically a component of, a loudspeaker assembly. The loudspeakers may be located in the ceiling, on the walls around the room, or at the room corners. Whatever arrangement is used, the purpose of the system is to ensure that the teacher's voice is clearly audible above the background sounds at all instructional locations within the room. Research has shown that in the average classroom, the teacher's voice usually arrives at the children at a level only 6 dB or so above the background sounds. (Mark Ross, Ph.D. and Harry Levitt, Ph.D., retrieved, February 4, 2005)

FM System

FM or frequency modulated systems, also called auditory trainers, consist of a microphone that the teacher uses to transmit his/her voice directly to a student who is using a receiver. The receiver can be a small amplifier at the student's desk, or to headphones or transmitted directly to the student's hearing aid. Wherever the teacher stands or the direction the teacher faces, the student is able to hear the teacher's voice at the same level above ambient room noise.

CART

Communication Access Realtime Translation (CART) is a transcription system that provides a word-for-word translation of everything that is said is settings such as courtroom, classrooms, churches, meetings or conferences. CART captions can be displayed on a computer for one person to read, or it can be projected to a large screen or broadcast via satellite or the internet. A trained transcriber must be used to provide this service.

TypeWell

TypeWell is a transcription system that is used as a realtime communication access or notetaking service provided by a TypeWell-trained transcriber. The transcriber does not Type word-for-word, but is trained to capture the meaing of what is said as weel as how it is said. Students read on a computer the notes as the transcriber writes. Students can also type questions and comments to the transcriber for clarification. Transcriber notes can be used as notes after the class.

Voice-to Text-to-Sign Language Technologies

Voice-to and Text-to-Sign Language technologies offer the promise of real time sign language interpretation using technology, however, the accuracy of the interpretation is not high enough for consistent use at this time. All of these products, whether voice-to-text or voice-to-sign language depend upon voice recognition and the software programs must be trained for a specific speaker. Accuracy rates are higher in a quiet environment limiting practical application classroom.

Cochlear Implants

A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard of hearing. The implant is surgically placed under the skin behind the ear.

An implant has four basic parts: microphone, which picks up sound from the environment; a speech processor, which selects and arranges sounds picked up by the microphone; a transmitter and receiver/stimulator, which receive signals from the speech processor and convert them into electric impulses; and electrodes, which collect the impulses from the stimulator and send them to the brain.

More children with hearing losses are getting cochlear implants at early ages each year. A student's IEP team must consider the special needs of a child with a hearing loss who has a cochlear implant, whether they be continued interpreter services, auditory training support, and/or tutoring services for academic subjects. Each child's needs will be different.

An implant does not restore or create normal hearing. Instead, under the appropriate conditions, it can give a deaf person a useful auditory understanding of the environment and help him or her to understand speech.

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A hearing impairment is defined by the Individuals with Disabilities Education Act (IDEA) as "an impairment in hearing, whether permanent or fluctuating, that adversely affects a child's educational performance but that is not included under the definition of deafness.

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https://www.adcet.edu.au/inclusive-teaching/specific-disabilities/deaf-hearing-impaired

(Yes, this is an Australian article, however, concept still applies).

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According to Deafness Forum Australia, approximately one in six Australians has a significant hearing loss. Within this population, most individuals have some level of hearing impairment and only a small proportion of the group is deaf. Types of hearing loss include sensorineural (nerve-related), conductive (affecting the outer or middle ear) or a mixed hearing loss (mixture of both types.) People who use Australian Sign Language (Auslan) often prefer to be referred to as deaf rather than hard of hearing. They see this as a positive identity rather than a negative label.

People who have a hearing loss are either pre-lingually deafened or post-lingually deafened. People who are pre-lingually deafened have lost their hearing before they acquired language. People who are post-lingually deafened acquired their hearing loss after they acquired language. For each group the impact of the hearing loss and the degree of deafness will vary.

Some people who are pre-lingually deafened use Auslan. Many received cochlear implants early at birth. Some rely on spoken language. Many communicate with a combination of spoken language and sign language. Some have normal language and literacy development. Some may have issues with literacy. It varies greatly, so it is important to understand the needs of each individual. All these factors need to be considered when assessing the types of reasonable adjustments.

People who have a post-lingual hearing loss generally acquired their hearing loss later in life. They may or may not benefit from listening devices. Some may learn sign language as a means to diversify access to communication. As with people who are pre-lingually deafened, it is important to assess the needs of each individual before implementing any reasonable adjustments. This is because the requirements of each individual can be diverse.

Students with a hearing loss may require accommodations and assistive devices to have the best access to education. Accommodations may be as simple as preferential seating or as complex as wireless assistive listening devices in the classroom. Some will require Auslan interpreters and live remote captioning. Each learner with a hearing loss should be assessed individually and accommodations should be implemented based on the unique needs of each student.

Impact of Hearing Loss

The learning processes of students with a hearing loss may be affected in the following ways:

Students who have been deafened in early childhood can be very different to students who have lost hearing later in life in terms of educational disadvantage. For example, their range of vocabulary may be limited, which in turn may affect their level of English literacy.

Deaf and hard of hearing students can sometimes prefer visual learning strategies. This can be a challenge in an environment where much essential information is delivered exclusively by word of mouth.

Students with a hearing loss may need to use assistive technology to participate in class. This assistive technology can be the laptop where software such as Skype can be used to deliver Auslan interpreters or captioning. For some it will be in the form of listening devices. For others it will be a combination of technology that includes both listening devices and computer based software.

The impact of hearing loss can cause delays in receiving learning material. Students who need information transcribed from tape must sometimes wait for a significant period of time for this to happen. This needs to be considered in terms of developing suitable timelines for the completion of work for each student.

Students with hearing loss may appear isolated in the learning environment. The possibility for social contact and interaction with other students is often limited, and this isolation or separateness may have an impact on learning.

Participation and interaction in tutorials may be limited. Students who cannot hear the flow and nuances of rapid verbal exchange will be at a disadvantage.

Some students with hearing loss coming straight from the school system have been familiar with a structured learning environment, and may require a period of adjustment when entering into the post-secondary learning environment. Communication difficulties and adjustments may lead to a level of anxiety about performing in front of others. This may affect participation in tutorials, particularly for students whose speech development has been impacted by their hearing loss.

Teaching Strategies

There is a range of inclusive teaching strategies that can assist all students to learn but there are some specific strategies that are useful in teaching a group that includes students with a hearing impairment:

Encourage students with a hearing loss to seat themselves toward the front of the lecture theatre where they will have an unobstructed line of vision. This is particularly important if the student is using an interpreter, lip-reading, relying on visual clues or using a hearing aid which has a limited range. Be aware that some students may not be comfortable with this suggestion or have alternate strategies. Respect their choices.

Use assistive listening devices such as induction loops if these are available in the lecture theatre. Hearing aids may include transmitter/receiver systems with a clip-on microphone for the lecturer. If using such a microphone, it is not necessary to change your speaking or teaching style.

Ensure that any background noise is minimised.

Repeat clearly any questions asked by students in the lecture or class before giving a response.

Do not speak when facing the blackboard. Be aware that moustaches, beards, hands, books or microphones in front of your face can add to the difficulties of lip-readers. Students who lip-read cannot function in darkened rooms. You may need to adjust the lighting in your teaching environment. If a sign interpreter is employed, follow the hints for working with a sign interpreter.

It is difficult for a student watching an interpreter to also take notes from an overhead or blackboard. An interpreter is unable to translate concurrently both your words and any information given on an overhead. It is important therefore that all information should also be available as handouts.

Provide written materials to supplement all lectures, tutorials and laboratory sessions. Announcements made regarding class times, activities, field work, industry visits etc, should be given in writing as well as verbally.

Allow students to record lectures or, preferably, make available copies of your lecture notes. Flexible delivery of teaching materials via electronic media is also particularly helpful for students who have difficulty accessing information in the usual ways. For students with a hearing loss, new technology - and the internet in particular - can be used to bridge many gaps.

Ensure that lists of the subject-specific jargon and technical terms which students will need to acquire are made available early in the course. If interpreters or captioning are being used as an adjustment, make this list available to the professionals providing the service as early as possible.

Any videos or films used should, where possible, be captioned. When this is not possible, you will need to consider alternative ways for students with hearing impairment to access the information.

In tutorials, assist students who lip-read by having the student sit directly opposite you and ensure, if possible, that they can see all other participants. Control the discussion so that only one person is speaking at a time.

Students with hearing loss, especially those with associated speech issues, may prefer to have another student present their tutorial papers.

Language abilities are often affected by hearing loss, depending on the age of onset. Students who acquired their hearing loss early in life may have literacy issues. In some cases, providing reading lists well before the start of a course for students with a hearing loss can be beneficial. Consider tailoring these reading lists when necessary, and provide guidance to key texts.

Allow assignments or reviews to be completed on an in-depth study of a few texts rather than a broad study of many.

Using Auslan interpreters and live remote captioning may require some adjustments in teaching styles, particularly the pace of the learning. Consult with the providers of the service early to identify any potential changes.

Where live remote captioning is provided, a transcript of the session can usually be assessed within 24 hours. It is recommended that these be emailed directly to the student as an accurate record of reference.

Assessment Strategies

Always consider alternative forms of assessment where necessary. Standards are not expected to be lowered to accommodate students with a disability but rather are required to give them a reasonable opportunity to demonstrate what they have learnt. Once you have a clear picture of how the disability impacts on learning, you can consider alternative assessment strategies:

When their range of literacy is an issue, students may require the use of a thesaurus or dictionary during exams. A personal computer with spelling and grammar functions may be required.

Provide alternatives to those assignments which are based on interviews or questionnaires, and be flexible with assignment deadlines, particularly if students have had to wait for transcripts of learning sessions.

Provide extra time in examinations, particularly extra time for reading questions. Some students will prefer to have questions and instructions 'signed' to them.

Related Resources

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Inclusive Teaching: Deaf and Hard of Hearing

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Inclusive teaching practices for Deaf an hard of hearing students.

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Using Assistive Technology like FM Systems!

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Using Assistive Technology like FM Systems!

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https://www.crisoregon.org/Page/91

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Deaf and Hard-of-Hearing / Resources for Educators

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Copyright © 2002-2022 Blackboard, Inc. All rights reserved.

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This was a beautiful approach to explaining how to work with your deaf/hard of hearing child!

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This was a beautiful approach to explaining how to work with your deaf/hard of hearing child!

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https://www.sedol.us/domain/627

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Exceptional Services for Exceptional Students

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Here's a blog by a mother of a deaf child!

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Here's a blog by a mother of a deaf child!

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https://www.mydeafchild.org/#welcome

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Like you, I am the parent of a child who is deaf.

When my daughter was diagnosed, I had so many questions, hopes, and fears. I searched for answers that sometimes took years to find. Nearly two decades later, I've created this site to help you get answers, access resources, and connect with a community that understands your needs.

As you start your own journey in parenting a child with hearing loss, I have a special video message for you:

American Sign Language is an important developmental tool that will help your child acquire a foundation for thinking and language (signed or spoken). Learning just a few simple signs will help you start to communicate and connect with your child!

Sign It ASL is a new online class that introduces parents like you to American Sign Language. Through the generosity of our partners, we are sharing our new online class free of charge to families when they need it most. To qualify, you must be:

a parent of a deaf or hard of hearing child 36 months or younger

currently residing in the United States

willing to provide qualifying documentation

Don't qualify? Don't worry!

You can take our o nline sign language classes for less than $8 per lesson. Sign It ASL a self-paced, fun, and affordable way to learn American Sign Language from ASL experts. Save 20% when you buy units 1, 2 and 3 together:

Let's Work Together

We'd love to make Sign It ASL available to more families free of charge. Do you know of an organization that would like to help us expand our free distribution? Let us know! Contact us at foundation@signingtime.com.

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Like you, I am the parent of a child who is deaf. When my daughter was diagnosed, I had so many questions, hopes, and fears. I searched for answers that sometimes took years to find. Nearly two decades later, I've created this site to help you get answers, access resources, and connect with a community that understands your needs.

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https://www.mass.gov/info-details/families-share-their-experiences-with-children-who-are-deaf-or-hard-of-hearing

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By Richard Wentworth

In June of 2007 my son Henry had his hearing screened shortly after he was born. I remember the sinking feeling I felt when the screener told my wife and me that neither of Henry's ears passed. We were told that the screen is not a perfect test, but that Henry should be seen by an audiologist. Weeks later at Henry's audiology appointment, we learned that Henry had a hearing loss. It was difficult, both practically and emotionally, to put this into perspective. During this confusing time, we received a call from a parent outreach specialist at the Massachusetts Department of Public Health, Universal Newborn Hearing Screening Program, to discuss Henry's diagnosis and the intervention services that we could get for him. The outreach specialist helped us to identify and organize the next steps in our plan for Henry's care. In addition, talking with another parent of a child with hearing loss helped us realize we weren't the only ones going through this, and bolstered our confidence that we could be strong enough to give Henry a good start and a good life.

By the Weems-Sheppard Family

"Dorothy's Congenital Cytomegalovirus results came back positive." That single sentence changed my entire outlook on motherhood and what it meant to raise a child.

I had a totally and unequivocally normal pregnancy. A touch of morning sickness in my first trimester was nothing compared to the Mono-like symptoms a Congenital Cytomegalovirus (cCMV) positive pregnancy typically brings. At 35 weeks gestation, my water spontaneously broke and I gave birth a few short hours later to a healthy, albeit small, baby girl that we named Dorothy.

Because of her early birth and Apnea of Prematurity, we stayed the Special Care Nursery (SCN) for 14 days. While there, Dotty's hearing test results showed an unresponsive left ear and we were referred out for further testing. Because of the hearing loss, her SCN doctor recommended testing her cCMV. We were assured that this virus was very rare and because Dorothy did not have the other symptoms of cCMV, it was extremely unlikely that she would test positive. It was only later that we learned how extremely common CMV was - more common than Down Syndrome, Spina Bifida, and Fetal Alcohol Syndrome.

The days passed and Dorothy grew strong enough to be discharged. The results for the cCMV test, however, were never passed along to us. It took three weeks before our pediatrician tracked down the results. She called with the news; "Dorothy's cCMV results came back positive."

Our Early Intervention team was at the house when I got the call and the one piece of advice I was given was "Do NOT Google 'cCMV'." I, of course, did not heed any of their advice and I dove head first into research about cCMV and came out the other end terrified of the prognosis. Children born with cCMV could have liver problems, lung problems, seizures, progressive hearing loss, mental disability, cerebral palsy, and progressive vision loss.

I felt like I was hit by an eighteen wheeler. We hit the ground running, though, and started seeing an Infectious Disease doctor at Boston Children's Hospital who prescribed a seven month course of a powerful antiviral medication that would help Dorothy's body combat the virus and hopefully stop the progression of her hearing loss.

Fortunately, Dorothy's MRI showed no brain damage as a result of cCMV. However, as we get close to her first birthday, her hearing in her left ear has been almost totally destroyed due to the virus and her hearing in her right ear is unstable. She wears a Bone Anchored Hearing Aid (BAHA) on a head-band to provide her auditory access to her environment and we use American Sign Language in the home and out in the community to ensure she isn't missing any language opportunities.

I never imagined that my child's life would be impacted in this way, by a common virus that I had never heard of, but with the help and support of the multitude of agencies surrounding our family, Dorothy's life will be full and she will have many success stories to share in the future.

By Leah F.

My daughter, Mira, who is now 9 years old, was diagnosed with a sensorineural hearing loss at 3 weeks of age. I remember the day vividly. She had failed the newborn hearing screening when she was born. They had told me this was normal and that there was a lot of fluid. When we returned for follow up she failed again and I was told she needed an ABR. There was not a thought in my mind that something was wrong.

At the ABR a couple of weeks later it was then that we received news I never had even thought of. Starving my newborn baby in the early morning hours to bring her to a test in a hospital where she needed to be still and sleeping I watched as they brought us into a very quiet sound proof room with a small crib and wires. I watched as they put little tubes into my daughters' ears attached to a computer and the sensor pads on her head.

After a couple hours of testing I was asked if my husband was close and could I have him come for the results. This is when I knew something was wrong. I called my husband and when the Audiologist went through the results, all I heard was that my baby was deaf and I started to cry and wondered what did I do wrong.

Hours after the diagnosis I called the Audiologist back to fully understand what I was told. She repeated to me with empathy and feelings that my daughter had a moderate to severe hearing loss in her left ear and a severe hearing loss in her right ear. My baby was deaf and in need of hearing aids. What an emotional roller coaster ride, which has lead to an amazing journey and world that I never dreamed was possible.

Mira wore hearing aids from practically birth until the age of 3 when we had finally decided that a cochlear implant was our next path. At the age of 3 and after numerous paperwork and meetings with ENTs, Audiologists, and Psychologists we had decided that we would have Mira undergo surgery in August 2007 on her right ear which was profoundly deaf. It was heartbreaking to have my daughter in a hospital bed (as it is with any parent) to be told they would give her "laughing" juice and to only watch her lose control and function of her body and almost look drunk. They wheeled her down the hall. When she returned with the surgery successful she awoke to a large bandage over her ear. The journey had begun.

Over the next few months we were activated, but what was in store next we didn't realize, we had to find the right Speech Therapist to assist with teaching Mira how to "learn to listen", "listen to read" and "read to learn". The process was overwhelming at times but we pushed through knowing the decision we made for our daughter and family was the right one. We met strong and helpful people that guided us through our journey. They included Teachers of the Deaf, Audiologists, and Speech Therapists trained and specializing in children with hearing aids and cochlear implants.

At age 4 we decided that it was time that Mira had the surgery on her left ear so that she would have the utmost access to the world around her. At the same time, our school realized they could not service her properly and the search began for the right academic setting for Mira. When we reached Clarke Schools for Hearing and Speech we knew that she was going to get the best benefits of her new access to the world. This was crucial in Mira's learning path and a benefit to everyone.

Now at the age of 9 and fully mainstreamed into our hometown school district, with a TOD (Teacher of the Deaf) from Clarke and a full functioning FM system with pass around microphone for group work, Mira learns and thrives. She is making hometown friends and she enjoys reading and dancing. Her dance studio even uses the FM to further the passion she has.

The journey is long and continuing. My daughter is deaf and proud but through technology we have been able to give her the gift to access sound, when she chooses. We are blessed as a family and continue to learn every day more about life.

By Donna V.

Once upon a time there was a family of four - a mother, a father, and two children ages 10 and 4.

The oldest child, Ashley, had exceeded childhood milestones in many ways - walked at 9 months, ran at 12 months, climbed jungle gyms like a monkey at 18 months, spoke in full sentences by the age of 18-19 months, and rode a bike without training wheels at 35 months.

It became apparent the youngest child, Sarah, was very different. She appeared to be "delayed" compared to the first daughter. Sarah crawled at 10-12 months and walked at 18 months but could not walk more than two or three steps without falling. She often bumped her head when she fell. Although she was talking and expressing herself with a few select single words, the connected speech and audibility of those words were not clear.

She received speech therapy through early intervention for a while but then Sarah's parents were told at age 2 she didn't qualify for continued speech services because "testing" put her speech in the average range. Just before age 3, early intervention conducted their periodic assessment and asked "what happened to her speech?" and they started speech therapy two months before she aged out of early intervention. The parents supplemented with private speech therapy.

Meanwhile, over a period of one year, Sarah had three audiological assessments conducted by a world-renowned medical center. All assessments were inconclusive and incomplete. Sarah's frustration in trying to communicate with others was evident. She would throw "fits," cry, and lash out at people. Everyone who tried to communicate or work with Sarah was frustrated. Sarah's parents encouraged Sarah to "show" them what she wanted. This was working, to a degree, but Sarah's family needed answers. The owner of Sarah's speech therapy practice encouraged Sarah's parents to seek yet another audiological exam at Children's Hospital in Lexington. By now, Sarah had just turned 4 years old.

I think you can guess where this story is heading. On the first visit to Children's Hospital, Sarah was diagnosed with bilateral sensorineural moderate to severe hearing loss. Given her diagnosis and the severity of her hearing loss her two speech therapists as well as her parents were shocked given the "advancement" of her speech. Although people could not comprehend Sarah's connected speech 80% to 90% of the time, she had enough speech that did not support that level of hearing loss. As Sarah had passed her newborn hearing screening, her parents, and the medical professionals, needed even more answers.

Sarah was now under the care of Children's Hospital Deaf and Hard of Hearing department located in Waltham. Children's Hospital "fast tracked" Sarah through multiple levels of medical care given her late diagnosis. The first step was to obtain hearing aids for Sarah. Many factors contribute to why people have hearing loss but the hearing loss technology available today helps people lead a productive and quality life.

Let's fast forward to Sarah's diagnosis of Enlarged Vestibular Aqueduct Syndrome (EVA). A devastating (for at least her parents), life-long unstable condition that's inoperable. This condition causes coordination problems, any bumps to the head could cause additional hearing loss and could progress to profound deafness, Ah, ha - "bumps to the head" - that was the key. Remember? Sarah was falling and bumping her head all the time.

Her parents were told Sarah should never participate in any contact sports for the rest of her life. This includes games such as kick ball in gym class, playing basketball at recess, climbing rock walls, avoiding monkey bars in the playground, etc. Anyone have bubble wrap for a very active 4-year old who absolutely loved to do all those things and more? After seeking consultation with Sarah's new Ear, Nose and Throat (ENT) specialist, Sarah's parents decided to take one day at a time and evaluate each situation as it presented itself. Sarah and her sister Ashley are learning sign language through a DVD program with support from their mother who had learned sign-language years ago (who is also trying to teach Sarah's father) all in preparation for the future. However, if Sarah were to go deaf, she would be eligible for a Cochlear Implant.

I am pleased to report that Sarah, my daughter, is doing great! She loves wearing her hearing aids, which she's had for six months, and doesn't like to be without them, even for a couple of minutes. With her hearing aids and continued speech therapy she is progressing and is a pure joy to listen to. As a matter-of-fact, we can't keep her quiet and she continues to hear new sounds for the first time! Her frustrations have significantly decreased and her behavior has significantly improved. She has a great sense of humor and has a never ending smile that will brighten your day. She has many hurdles ahead of her but with the support of family, friends, her audiologists, and Children's Hospital the hope is that she will progress nicely in the years to come.

If you, or someone you love, is having trouble hearing, please seek the guidance of an audiologist or other medical professional. Your ears depend on it!! An actor once said:

"You should HEAR what you're missing."

By Courtney Aseltine

One of the questions I'm most commonly asked about Connor's hearing loss is this: "How did you know? He's so little." And it's an understandable question. Obviously a newborn baby can't tell you that something's wrong, and even if he could, he doesn't know what the world is "supposed" to sound like. How could he tell you something isn't right? When people ask me this question I always give praise to the newborn hearing screen. Just 25 years ago less than 3% of newborns were screened before leaving the hospital, as opposed to the nearly 98% screened today.

Connor's first two weeks of life weren't easy ones. He was born with bilateral pneumothoracies (holes in his lungs) and severely low platelets that left him in the NICU for two weeks. After 15 platelets transfusions, multiple IVIG infusions, and two surgeries, he was finally ready to come home. When he referred (a fancy term they use instead of "failed") his newborn hearing screen the day of his discharge from the hospital, I didn't know what to think. Initially I went into panic mode, thinking the worst (my natural reaction) but everyone assured me he would be fine. I was told it's normal for newborns to refer, mostly due to fluid in their ears. We left the hospital with Connor that day, making a follow-up for him to be re-screened in a week. After failing his screen the second time, we returned the following day for more extensive testing. That was the day everything changed.

I could go on and on about the waves of emotion I felt that day, and in the days following. But instead I've decided to share with you the letter that I recently wrote to Connor on the day he turned 9 months old, because as you'll see, so much has changed.

Dear Connor,

I still remember the day like it was yesterday. Daddy and I sat in the small, dark room, you on my lap, Daddy sitting anxiously next to us. "Don't worry", everyone told us. "It'll be fine", they said. But by the silence in the room and the look on the audiologist's face, I knew something was wrong. The audiologist tested your left ear first. "He has a profound loss," she said. She continued talking; something about testing the right ear, but I couldn't hear the words coming out of her mouth. My little baby, only three weeks old, who had already endured more than one should in life, was deaf in his left ear. Tears filled my eyes while you slept innocently in my lap and the testing continued. "Good news," she told us. "He has some hearing in this ear." Some? Why not all? How is this good news? These thoughts and so many more filled my head. I tried to fight back the tears, but they came on full-force. So many questions ran through my mind as the life I had imagined for you slowly faded away. I tried to hear what the audiologist was saying. There was talk of hearing aids, cochlear implants, early intervention, and FM systems, but all I could think about was if my baby would ever be able to hear my voice. I remember leaving the hospital that day and crying the whole way home. If only I knew then what I know now. Of course I would have been sad, but I also would have been filled with an incredible amount of hope. So often we look at a disability and see what someone is not able to do, but it isn't often that we focus on the opposite. Everyday you inspire me. You wake up with a smile on your face and you are so in awe of the world around you. You work so hard, and at 9 months old you are right on track with your peers. You have found your voice and you certainly found what remains of your hearing. I do know that journey that we're on won't always be easy, but I also know that it will always be filled with love and support. You have brought so many wonderful people into our lives, and we thank you for that. So while I can't sit here and say I never feel sad, I will say that I honestly wouldn't change a thing. And as for that life I saw fading away? It's back and brighter than ever. Shine on. You are amazing.

Love,
Mama

In the beginning I was convinced that Connor's hearing loss was caused by his stay in the NICU, but now I realize I just wanted someone to blame. Like if I knew someone else caused it, it would make it better. But that's not the case. It turns out Connor has something called EVA (enlarged vestibular aqueducts). There's lots I could tell you about EVA, but here's what matters: it's progressive. That means there's a chance that Connor will lose the rest of his hearing, and it could happen any day. He could wake up hearing and it could be gone within hours. I try not to think about it and focus on helping him hear as much as he can, while he still can. He has wonderful therapists and we've found amazing support at a local program for Deaf/HH kids. Like I said in my letter, I'm not going to pretend I don't ever feel sad. When I'm giving him a bath and I try talking to him, but he doesn't even look because his aids are out. When I'm driving in the car and I'm singing to him, but he can't hear me (no aids in the car, he tries to eat them). Or at night when he wakes up crying and I'm trying to comfort him, but I'm not sure he even hears what I'm saying. These are the moments I feel sad. But that's all that they are. Moments. Small little pieces of a much larger, amazing life, one that I would never change.

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Families share their experiences with children who are deaf or hard of hearing

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- Sec. 300.8 (C) (5). Individuals with Disabilities Education Act. (2017, May 2). Retrieved October 18, 2022, from https://sites.ed.gov/idea/regs/b/a/300.8/c/5
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- Mayo Foundation for Medical Education and Research. (2021, April 16). Hearing loss. Mayo Clinic. Retrieved October 18, 2022, from https://www.mayoclinic.org/diseases-conditions/hearing-loss/diagnosis-treatment/drc-20373077
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