If you have come to this page, chances are that your son or daughter has been diagnosed with a severe to profound hearing loss. Receiving such news can be quite a shock. It is common for parents to be concerned about what the future will hold for their child. Questions like the following are common:
- Will my child be able to talk?
- Will my child be able to understand me?
- What opportunities will my child miss out on?
- How is this diagnosis going to change my family?
It is important to know first up that for the vast majority of children who are diagnosed with severe to profound hearing loss, learning to hear and speak at levels comparable to their hearing peers is now normal.
To achieve this, you as a parent are about to enter a journey. Its going to require some tough work for a couple of years. The single most important thing to realise is that you, as the parent, are the key to your child achieving the ability to hear and speak at levels comparable to their hearing peers.
There are some important decisions for parents to make. Typically the professionals shy away from providing specific advice around some of these decisions. This page will take you through these decisions and provide very specific recommendations (and the reasons why).
Decision One: Should we get Cochlear Implants for our child
Once you have been assessed for a Cochlear Implant and the Cochlear Implant Programme offer your child one, you need to decide whether to get a Cochlear Implant or not.
To choose to get Cochlear Implants allows your child to develop neural pathways, to hear and to most effectively access spoke language (whatever language or languages that may be).
To choose not to get Cochlear Implants means you are choosing not to allow your child to develop their neural pathways – something that gets increasingly difficult with age and almost impossible once a child passes the age of 7. You seriously limit the choice of your child to be able to hear in the future.
We strongly recommend that you chose to get Cochlear Implants as soon as possible if they are clinically recommended for your child.
Decision Two: One or Two Cochlear Implants
The New Zealand government currently (from the 1 July 2014) funds two Cochlear Implants for children being newly implanted. In the past many children only received one implant. Where two implants are clinically viable, this should be done.
We strongly recommend that you chose to get two Cochlear Implants at the same time if they are clinically recommended for your child.
Decision Three: Brand
New Zealand there is no longer a choice, unless you are privately funding, as to which brand. Both programmes only provide Cochlear brand implants for government funded clients. Both will provide Advanced Bionics and MED-EL brand implants, as well as Cochlear brand implants, if privately funded.
We recommend, if you have the choice, to choose a MED-EL brand implant.
Decision Four: Therapy Approach
Therapy is critical to teaching your child how to hear and speak. There are two approaches: an auditory verbal therapy (AVT) only approach or a mixed approach combining oral and sign language (NZSL).
There have been a number of studies internationally on the effectiveness of each approach. The results are somewhat mixed. However the more empirical studies, and certainly the larger empirical studies, tend to favour an AVT only approach.
A good resource for thinking about this important decision can be found here.
We recommend an ORAL approach to therapy.
Decision Five: Team Coach
Someone is going to have to put a heap of effort into working with the child over the next few years. This can include attending a large number of tuning sessions at the Cochlear Implant programme, managing the Cochlear Implant equipment, ensuring batteries are changed, attending specialist appointments and most importantly of all, become the child’s primary language teacher/therapist. It really makes sense for one caregiver to lead this and have their hands on everything.
The current therapy model is designed around an implicit assumption a parent will, in addition to this work, take on the role of coordinating all the different people and agencies working with their child. This is particularly the case in the southern zone.
We recommend that, if it is at all possible, one parent stay at home to focus on being the ‘Team Coach’ for their child.
For more specific information about these decisions, please read A Parents Guide to CIs in the NZ Southern Zone. This document, while written for the southern zone, is still useful for northern zone parents.
Taking these decisions will provide your child the optimal opportunity to learn to hear and speak. If your child is identified through the Universal New Born Hearing Screening Programme (or before 12 months) you should expect your child to be caught up with their hearing peers by the time they start school.
We have one final recommendation for parents. Find yourself a mentor – a parent who has been on the same path as you are embarking on. Your Cochlear Implant programme should be able to help with this. If there is no one in your area, at the very least join the New Zealand Cochlear Implant Group facebook page (this is open to any New Zealand parent of a child with Cochlear Implants).