Hearing a doctor or audiologist say “Your child has a hearing loss” or “hearing difference” may come as a shock to you or you may be relieved to have an answer. You may be celebrating that your child is deaf or hard of hearing if you or a family member is, also!
Most people do not know much about hearing loss and what it means for their child and family. As the professional who delivered this news to you talked further, you may not have heard much of what he or she was saying. In your mind, questions may have started to churn:
“Can it be corrected?” “What caused it?” “Will it get better?” “Will it get worse?” “Can he learn to talk?” “Can she go to regular school?” “If we have more children, will they be deaf, too?” “Can he get married?” “Will she be able to get a job?”
The answers you get to some of these questions may not be what you want to hear; “No, this type of hearing loss cannot be medically or surgically corrected.” Or “We don’t know for sure what your child’s future holds–it depends on a lot of things.” You want the best for your child, and now you are not sure you know what to do.
In the days and weeks following the diagnosis of your child’s hearing difference, you may feel like you are on a roller coaster. Your feelings may swing from despair to hope, from sadness to anger, from feeling incompetent to feeling confident. As you carry out your daily routines –finishing a chore or arriving at a destination – you may realize that your mind was somewhere else, thinking about your child and what you should do. You may also find within yourself unexpected sources of strength to do what has to be done in spite of feeling that you are living with uncertainty.
The professionals who evaluate your child’s hearing will have recommendations for you: see an ear specialist, meet with early intervention professionals, and have more testing done. As you follow these recommendations, you will meet people who can help answer your questions and explain the decisions you must make. The information they give you and opinions they express can sometimes create more confusion for you!
You will be making many decisions in the days ahead. Give yourself the time you need to make decisions that feel right for your family. Keep in mind there are very few decisions you will make that you cannot change as you learn more.
Here in Colorado, there are many professionals and experienced parents that are here for you as you begin your journey of raising a child who is deaf or hard of hearing. The following is a list of people/agencies/organizations you are likely to encounter, and/or are free to contact for more information and support
Contact or referral to local Colorado Hearing Resource Coordinator (CO-Hear) & Early intervention Colorado (Part C)
The audiologist who diagnosed your child’s hearing loss should refer you to the CO-Hear system. CO-Hears are available for families with children who are up to three years old.
The CO-Hear can help by:
- Initial in-home visit(s) at which time communication options are discussed and demonstrated and programs specific to the needs of deaf and hard-of-hearing children in the community are explained.
- Emotional support is offered.
- Assistance in securing funding for intervention services and hearing aids.
- Connections to other resources within the community.
- Service Coordination.
- Printed materials and videos shared with families.
- Careful assessment of your child’s developmental progress during early intervention.
- FAMILY Assessment, LENA assessments, and more
- Representation at IFSP meetings and IEP meetings.
- Consultation with school districts around transition issues.
- Connection to the state-wide parent support group, Colorado Families for Hands & Voices.
Click below to find out more about the CO-Hear Coordinators: http://www.csdb.org/Default.aspx?DN=8247365b-
Or contact the Early Education Consultant:
The CO-Hear will also connect you with Early Intervention Colorado. link to: http://www.eicolorado.org/ You have the right to service coordination through Part C of the Individual with Disabilities Education Act. The service coordinator helps parents obtain the services they need, facilitates timely delivery of these services, and helps the family to coordinate the services that are provided by different professionals from various agencies. It is the responsibility of each state to develop a system of service coordination to meet the needs of families.
Evaluation by an E.N.T. – Otologist, Otolaryngologist or Ear, Nose, Throat (ENT) Physician
During the diagnostic process, your audiologist will get medical clearance by referring you to an ENT.
The ENT can help by:
- Confirming that there is not a medically treatable condition in your child’s Outer ear or middle ear that is causing the hearing loss.
- Answering your questions about medical or surgical treatment of different types of hearing loss.
- Scheduling further procedures (i.e. urinalysis, CT scan) to rule out other causes of the hearing loss.
- Signing a form authorizing use of hearing aids with your child (required by law in some states before hearing aids can be fit on a child).
- Placing ventilation, or PE, tubes in your child’s eardrums if he has chronic middle ear disease that is not resolved by antibiotics in a timely way.
Contact Colorado Families for Hands & Voices
Parent Story: I remember how alone and overwhelmed we felt when we first learned of William’s hearing loss. It was tremendously helpful to connect with and talk to other parents of children with hearing loss, particularly the same level of hearing loss, about how to deal with it all. Having parents share personal stories can help new parents to better understand, accept and eventually advocate for their children. Some of the most important insight we have gained in this journey has been from other parents.
Parents report that the parent-to-parent connection is one of the most valuable resources and support when starting the journey of parenting a child who is deaf or hard of hearing.
Colorado Families for Hands & Voices is here to support you. Explore our website
Colorado Chapter: https://co-hv.org
Hands & Voices Headquarters website: https://handsandvoices.org/
Other parents can help by:
- Sharing experiences they have had with professionals and early intervention programs.
- Telling you about people and information sources they have found useful.
- Listening to you.
- Sharing with you their feelings related to parenting a child with hearing loss and how their feelings have changed over time.
- Telling you about their child’s achievements.
- Getting together with you so your children can play together. (See Guide by Your Side section below)
Guide by Your Side
The Hands & Voices Guide by Your Side program is an exciting program that provides an opportunity for a family who has just learned of their child’s hearing loss to meet with another parent of a deaf or hard of hearing child. The family may understand what the new family is experiencing and can help to answer their questions.
The Guide-By-Your –Side Program can help by:
- The opportunity to establish a supportive relationship with another parent of a child who is deaf or hard of hearing.
- Unbiased information regarding communication options.
- An understanding of the unique needs of infants and young children who are deaf or hard of hearing.
- Answers to questions or links to other knowledgeable resources available locally, regionally, statewide or nationally.
- An introduction to other parent support opportunities available to families of a deaf or hard of hearing child in Colorado.
Enrolling in the Guide-By-Your-Side Program is easy, confidential and free.
- Contact: firstname.lastname@example.org or Jami Fries at 719-650-3159
- Click for more info on your local Guide by Your Side Parent Coordinator
There are other support organizations that connect families.
- Colorado AG Bell www.coloradoagbell.org/
- American Society for Deaf Children www.deafchildren.org
Learn About Communication Options and Programs
Communicating with your child is of the utmost importance! Two-way communication, responding to your child and encouraging your child to respond to you, is the key to your child’s language development. There are different ways to communicate and different philosophies about communication. As you think about how your family communicates now with your child and how you would like to communicate with him or her in the future, you are thinking about the communication methodology/mode issue. The best way to decide which approach to communication will be best for your child and family is to be open about all the modes, ask questions, talk to adults who are Deaf and Hard of Hearing and other families with children who have a hearing loss, and discuss, read, and obtain as much information you can about the various methods.
The people who you come in contact with (the CO-Hear, Hands & Voices, other parents, Audiologists) etc. will all give you input and support as you go through this process.
Here are some additional resources regarding communication decisioning as you navigate your way:
- The Hands & Voices Communication Considerations Series
- Decision Guide to Communication Choices
- Read this Article about “Hearing Parents in a Deaf World”
Discuss the use of Hearing Aids with a pediatric Audiologist including information on loaner hearing aids.
“At a time when we were feeling paralyzed with grief over our infant son’s deafness, it was extremely helpful to be handed the loaner aids so early & without a long process.
– Parent quote
Your audiologist will discuss, the types, brands, costs, and benefits of hearing aids and other amplification options.
Hearing aid loaner banks support these needs (Coverstone, 2007):
- Immediate access to amplification
- Amplification trial before cochlear implantation
- Delays while authorizing third party payment
- Short term needs while awaiting medical intervention
Recent legislation efforts have led to a mandate for insurance coverage of children up to age 18 for hearing aids. More information about this can be found here:
Learn about assistive listening devices (such as DM systems, cochlear implants, etc.)
Each child has unique needs that may benefit from technology. Parents have choices to make to promote the healthy development of their child. Amplification devices such as hearing aids, cochlear implants, and DM systems (you might also hear FM, RM or HAT- Hearing Assistive Devices) that work with aids and implants are available to children who are deaf or hard of hearing. Other technology options include, but are not limited to: captioning, videophones, and flashing lights for clocks, doorbells, phones. You will benefit from ongoing support as you determine the technology needs of your child, secure funding to pay for the device/s and maximize the benefits they offer. The choices that are made often change over time.
Hearing aid loaners are often available on a temporary basis, while you work to obtain your child’s permanent device/s. Your audiologist will be able to tell you more about this.
- The Colorado Resource Guide for Families who have Children who are Deaf/HH
- You are not alone (click here for more information on hearing aids, language and learning, and importance of parent-to-parent support)