My daughter, Katya, was bilaterally implanted in Dec 2008 when she was two years old. I would like to share some of my learnings to help parents starting the journey.
I would place a caveat on what I write. Each family is different. And a lot of the aspects of having cochlear implants keep on developing. So please take these ‘tips’ as advice rather than rules.
Your child can learn to listen and speak just like any other child
In recent times there has been a meeting of a number of pieces of a puzzle that means that children born with no hearing can learn to listen and speak to levels where they are indistinguishable in ability to children with no hearing loss. The critical elements are new born hearing screening, early intervention, bilateral cochlear implants before 12 months old and high quality auditory verbal therapy. Parents being told their baby has a profound hearing loss need to know that hearing loss will not be a limiting factor for their child.
Always retain your last map
When your child has maps made for their processors, always ensure the last map they used is retained. All modern processors can hold at least 4 maps. So there is plenty of room to retain the old map.
Retaining the last used map means that if the new maps don’t work out, you can switch your child back to a map that is known.
Don’t use ASC/SCAN/ClearVoice for children
Modern processors have pre-processing algorithms that are designed to reduce background noise and allow the user to hear people’s voices better.
These are completely appropriate for children with only one cochlear implant. However for children with bilateral cochlear implants they are inappropriate. These algorithms remove input to the child. It is important for children to be exposed to the “full picture” of sound so their brains can learn to process sound. The brain is a far better ‘pre-processor’ than any computer chip will ever be.
Aim for “eyes open, ears on”
If you want your child to hear like any other child through their cochlear implants then they need to be wearing them as much as possible. Practically that means whenever they are awake. The pattern they start with as a child is the pattern they will hold through teenage years and into adulthood. If you give them “hearing breaks” as a child, they will need to take breaks as an adult. If you run an “eyes open, ears on” approach their cochlear implants will become as much a part of them as their hands and feet.
Exit “professionals” and people who don’t share your aspirations
As a parent of a child with cochlear implants you will have extra work to do. There are appointments to attend. There is the management of the processors. There is therapy to learn and provide. It is a busy life.
All professionals have different views on cochlear implants and the approaches to them. True professionals will provide you, as a parent, advice and then will follow your decision – no ifs, buts or maybes. Unfortunately such professionals (audiologists, therapists, teachers, etc) are a rarity. Even more rare are professionals who will change their point of view based on a parent’s decision.
If a professional won’t accept your decision it is best that you part ways. Either explicitly or implicitly they will undermine your decision when working with your child. You will struggle to trust them. And that will just add another level of work and stress to your already busy life.
To this end, I operate a one strike approach with professionals. I will give them one chance and then I exit them. With one exception, every professional I have given more than one chance to I have eventually exited. As I say, professionals will rarely change their view based on a parent’s decision.
Get bilaterals – preferably at the same time
This is a no brainer. Get two cochlear implants.
The only time a parent should chose to get one cochlear implant for their child is if their child has genuine single sided hearing loss. If there is hearing loss in both ears then dive in and do both. There are a multitude of reasons for doing this. The most important is it means your child only needs one operations. The second most important is that it aids in developing good binaural hearing.
Schedule your battery changes
As a busy parent managing your child’s processors can be a strain. One obvious challenge is the batteries running out. A very simple way to remove this issue is to figure out how long the batteries will last. If they will normally last 3 days, change them every second night. Then you know they will never run out. If your child’s processors uses rechargeable batteries, they should easily last all day. Change them each night.
Schedules and routines are a sanity saver.
Don’t mix language modes
This is a controversial topic. There are certainly views that are different to mine. However I will keep this very simple.
If you want your child to listen and speak then teach them to listen and speak. Period. If you add visual languages you will alter the way the brain is wired and they are less likely to develop strong listening and speaking skills.
Tricks for changing Cochlear N6 mic covers
I do things a bit differently to the Cochlear videos. Each mic cover has dimples at 12 O’Clock and 6 O’Clock. I align them based on those. I place the cover over the hole and use my finger nail to wipe across the plastic strip the cover is attached to. Once it is in place I twist the plastic strip which detaches it from the cover.
Don’t use FM system
If your child has one cochlear implant then get into using an FM system. They need it.
However if your child uses bilateral cochlear implants then do not use FM systems. Children need to learn to listen and hear in challenging situations. Life is lived in the world, not an audiologists test room. And the world is noisy.
A wise audiologist once told me that if an environment is too noisy for my daughter, its too noisy for everyone else.
With Cochlear Implants your child is not deaf
A child with bilateral cochlear implants can learn to hear functionally extraordinarily well. In fact, with good maps, it is hard to observe any difference between a kid hearing through cochlear implants and a kid hearing through their natural ears. And that is really the way to see these kids. They are children who hear through cochlear implants. They are not deaf children.
- Some will argue that they are still deaf when they take their processors off. The obvious answer then is don’t take them off.
- Some will say, you have to take the processors off to swim. That is rubbish. All brands have swimming accessories.
- Some will say they are still deaf if their batteries run out. I say, make sure the batteries don’t run out. Change them on a schedule.
- Some will say the processor can break down. I say have a back up set of processors.
- Some will say they are still deaf when they go to sleep. I say I would prefer not to be woken up when I sleep and frankly if I am fast asleep I don’t hear anything.
These kids hear through cochlear implants the same way so many people see through a pair of glasses. The deaf tag is a historical anachronism with large amounts of baggage that should not be loaded onto a child with cochlear implants.
Get yourself some Hearing Henry headbands
Processors are a bit big for babies. The easiest way to address this is to get a Hearing Henry headband. The processors mount on the headband which takes the weight off the ears. It also helps keep the coils on and places the processors in the right place on the head to hear properly.
These are sanity savers for parents.
Aim for the stars – high expectation
When your child is born you are filled with wonder at all the possibilities for your child’s future. They could be and do anything. One of the most common feelings when a parent gets a diagnosis of hearing loss is a sense that lots of possibilities are no longer possibilities for their child. Over time parents learn that this is not the case. One of the most important things for parents to grasp is that they can hope and dream big for their child with cochlear implants. It’s actually the parent’s aspirations that will be the biggest limit on what their child can and will do.
“Aim for the sun. Even if you miss you will still hit the moon. And that’s a pretty amazing achievement”
Pony tails for girls
It is important to not use strong magnets on the coils. doing so can lead to skin break down. Conversely it is important to keep the cochlear implant coils attached. For girls this is easy. Once your child has enough hair, form pony tails around each coil. This can be part of a routine each morning. Once in place the coil will not fall off. This is one more thing that parents can remove from the ‘concern list’.
Seek out noise
Noisey situations are not bad for children with bilateral cochlear implants. In fact it is important for parents to expose children to these situations so they can learn to discriminate between background noise and noise or speech they want to hear. And it is important to practice this. Practicing in extremely challenging situations makes hearing in less challenging situations (i.e. the classroom) easier.
Some examples of good places to practice are food courts in malls, fast food restaurants, children’s indoor playgrounds and almost any entertainment event. Most of these environments have little thought given to their acoustic characteristics. Instead they are designed for hygiene and durability.
Using your drying kit
I recommend putting your child’s processors in a drying kit every night regardless of whether they really need drying. In most environments they will need some drying because of body moisture. However the main reason for putting them in a kit each night is that it is a good routine to be in which will prevent the processors getting misplaced. Remember… routine is a good friend to parents of children with cochlear implants.
Putting Aqua plus accessories on
The Cochlear Aqua plus can be a bit fiddly to put on and take off. Once on it is a fantastic invention. Here are some tips:
- Always, always, always pull the coil plug off straight. Never twist or apply uneven force.
- It is quite ok to scrunch the Aqua plus silicon sleeve.
- Be careful not to place too much force across the battery to processor bayonet joint. This is a weak point in the N5/N6 design.
- Close the bottom bung up first, before putting the waterproof coil plug in. This allows air to escape.
- Put the coil plug in very gently and most of all, put it in straight. Feel the plug align before pushing it in.
Kids develop in spurts – don’t be discouraged by the lulls
My experience is that language development comes in spurts. For my daughter it took a while for the first word. Then there was a big gap until the next little spurt. The gap between each spurt got smaller and smaller until we struggled to see the growth because it was happening all the time. When you are at that stage extended family are really useful because they see your child infrequently and get snapshots of the progress.
Our experience is it took 6.5 years to catch up and get all the phonemes sorted. It can be a long journey. The lulls between spurts can be scary. Persistence is important.
The earlier the better
The earlier a child is implanted the better. For my daughter the 2 years gap meant we had a lot of work to do (6.5 years). Children implanted at 6 months old are likely to be well and truly caught up with their hearing peers before school… even before kindergarten.
Getting implanted early is worth its wait in gold because every week is like a month in those early days for language development.
What do I need to know heading into surgery
The surgery day will be the worst day of your life as a parent. There is no two ways around it. There will be uncertainty, doubt and fear. I have no better advice for parents than to focus on two days post surgery and just do it. It will be emotionally tough… possibly more so for fathers as ones ‘hunter, killer, protector’ instinct comes out. Remember Dads… don’t punch out the doctors… they are helping your child. 🙂
Some things to know:
- In a UK study, of over 1000 cochlear implant surgeries carried out there were no deaths or serious issues. Your child will be ok.
- Surgery takes around 1.5 hours per side.
- Babies tend to be grizzly and sleepy for 12-24 hours. Then they bounce back..
- Older children it may take longer to pass out the anaesthetic and bounce back.
- Take a spare pair of clothes. Your child may chuck on you.
- The bandages on the head are big. Best to have button up tops for your child
What to expect in your first year
Every cochlear implant programme has different approaches. This is a rough guide to the visits to your cochlear implant centre. You wouldn’t want to be anything less than this.
As you can see this will be a busy time.
What should happen at a mapping
Every cochlear implant programme is different. In fact every audiologist is different in my experience. I don’t think this should be the case most of the time. That said, this is what I look for in a mapping session.
Life as a commentator
One of the most important aspects of therapy is to expose your child to lots and lots of language. Because they have had less exposure they need to catch up. A simple way that everyone can do is to commentate everyday activities. If you have ever met one of those people who just won’t shut up… well your job as a parent is to become one. Literally everything needs to be talked about. Obviously leave space for your child to talk.
Life is a therapy session
Everything can be turned into a therapy session. Supermarkets, for instance, are a great live therapy session with colours and categories. Likes and dislikes. Groups and individual items. The language possibilities are endless. They are suitable for all ages and stages. From giving your child a choice between two options through to asking if they want something to elicit a “Yes”, through to more advanced discussions of what ingredients are required to make a meal. Approaches like this can be rolled into any situation and provide your child exposure to a rich language and vocab.
Be warned however. If there is a younger sibling they will benefit hugely from this as well and will likely develop extremely strong language skills. They will also learn that life is a commentary and a therapy session and literally won’t shut up… LOL! Which is good because they can then become a “therapist” for your child with cochlear implants.
Time on is more important than loudness
In the early stages after switch on your role as a parent is to ensure your child’s cochlear implants are on as much as possible. You need to work on getting your child wearing them whenever their eyes are open. In addition your audiologist will be asking you to work on getting your child to ‘tolerate’ more and more powerful maps. In doing this, remember that time on is the more important. If your child tiers, it is better to have them keep their processors on at a lower strength map than have them get upset at their processors.
Bribe, bribe and bribe (otherwise known as reward, reward and reward)
Parents of kids with cochlear implants need to make full use of rewards. This can be a hard journey for you and your child. While you might idealistically prefer your child to have fruit, if chocolate is what will get them to do what you need, give them chocolate. Bribery is perfectly ok.
How to induct teachers
Realise that most teachers will never have come across a child with cochlear implants. For many it can be a scary. Some will have preconceived ideas about “deaf kids” and what they are capable of. And worst of all, some will think they know about kids with cochlear implants but be basing that off experience from the distant past when outcomes weren’t as good.
In all these situations the most important aspect to communicate with your child’s teachers is your aspirations for your child. You must get this through to your child’s teachers. If they won’t share your aspirations, get rid of them fast.
When you have teachers who share your aspirations onboard, it is important to help them understand basically what cochlear implants are, how they work and some of the critical safety aspects about them. I have a standard guide that I update each year that gives:
- Our aspirations
- A quick medical history (incl. diagrams of the different components)
- Where we are at now
- What are the dangers (magnets, electricity, head knocks, etc)
- What they are to do if one of these dangers materialises
- Names of those involved (therapist, audiologist, etc)
- Some links (like how to change the batteries)
This seems to be very helpful.
I also insist on the teachers watching these two videos. These videos called “Listen… I’m Speaking” show kids with cochlear implants at the start of school in part 1. And in Part 2 it shows them in the later years of their schooling. They provide a real eye opener for teachers as to the limitless possibilities for kids with cochlear implants.
How to induct classmates
It is important for your child’s classmates to know about cochlear implants. They need to be de-mysterfied. I come into my daughters class and do a little talk about her cochlear implants. Some things I do that I find useful include:
- Bringing one of her spare processors in for the children to pass around and look at
- Showing a picture of the head x-ray
- Explaining how hearing works for natural hearing people and contrasting that with how cochlear implants work
- Getting the kids to try to thread a fury pipe cleaner into a shell to see if they can be a cochlear implant surgeon
- Describing the processor as being like three tiny laptops (Cochlear N6 processors have 3 micro-processors in them) and explaining that they need to be treaded with the same care as we should treat a laptop computer
I ask lots of questions and everyone in the class ends up answering a question. They also end up with a chocolate or the like for answering a question. I make sure the time is remembered positively.
Try to know the cause of your child’s hearing loss
If you can, find out what is the cause of your child’s hearing loss. It’s not something to necessarily prioritise while you are busy getting to grips with managing your child’s cochlear implants. But it can be helpful in a number of ways.
The most important way is for your to know if there are any other issues that are likely to be heading your way. If the cause is Ushers syndrome (a genetic abnormality) know this allows you and your child to plan for the likely loss of eye sight later in life (normally in the 20s). If the cause is CMV, there are quite frequently other developmental issues that run with this. If the cause is Connexion-26, like my daughter has, there tends to be few secondary issues.
These are just examples. Information is power to a parent. The advances in genetic testing in the last 5 years has been enormous. Make use of this to forewarn and forearm yourself.
Sit on your hands – use your voice
One technique I taught a number of people working with my daughter is how to emphasis the auditory side of communication. With children it is very easy for adults to resort to ‘showing’ children how to do things when communicating. When a child has had an auditory deficit the temptation is even more. However it is super critical that those working with children with cochlear implants use their voices.
The guide I taught is to literally sit on your hands. Take them out of the equation. Use your voice.
I combined this with a staged engagement because obviously sometimes there is a need to demonstrate some things. A good guide is to do the following:
- Ask the child to do something
- Ask a second time
- Ask a third time but use different words
- Ask a third time but this time break it down into just the first step
- Ask a fourth time but describe this first step in a different more simple way
- Demonstrate the first step yourself commentating it using the language you have used and then ask the child to do emulate what your have done
- As a very last resource help guide the child to do the task but make sure you are commentating the task as you do it
In short, do everything possible to use language to guide the child. I should also say that repeating yourself is a great opportunity to get more language into your child. Don’t get frustrated – get creative about the different descriptive language you can employ. Even if you ultimately need to get to step 7, you will have had a fantastic opportunity language teaching opportunity.
We use skater style bike helmets (no straps other than under the chin). We get them a little bit bigger and use a thin beanie style hat underneath to ensure processors and coils are all held in place and provide a bit of extra protection. These helmets tend to have pads that can be placed. We ensure they do not sit over the coils.
Use “norm-referenced” language and speech assessment tools
Children with cochlear implants need to have their language development closely monitored. These children will most likely be starting with a language deficit. The aim is for them to make better than year on year development so that any deficit is reduced and eventually eliminated. To do this I would highly recommend that parents ensure their child receives an annual language and speech assessment from a competent speech language therapist (or equivalent) using norm-referenced assessment tools.
Norm-referenced assessment tools are calibrated against the general population. Many deaf education providers still test using tools that are either not calibrated or are calibrated against children who are deaf. This is simply stupid if your goal for your child is to have language as good as or better than their classmates. Speech Language Therapists tend to realise this. People working in the deaf education institutions tend not to have the same understanding and competency.
About 4 or 5 months after my daughter got her cochlear implants she started getting infections around her right implant. The scar line on the right side had never really settled like the left side. In hindsight we suspect an infection had been bubbling away. We tried bouts of antibiotics and a few other things. Eventually she had surgery. We were very fortunate that the surgeons and other medical staff were able to save the implant. The surgeons removed the granulated flesh, transplanted some tissue, washed the implant with alcohol and antibiotics, washed the area with antibiotics and stitched it all up. My daughter then had 1 week in hospital in seriously high doses of antibiotics, then 9 weeks of daily IV antibiotics and then 6 weeks of oral antibiotics. 16 weeks in total! It was a nightmare as a parent.
The lessons from this were:
- Infections are super serious. If you have the slightest suspicion, go see your surgeon.
- Don’t muck about with short bursts of antibiotics. Go long and hard at any infection.
Routine, routine, routine
This is perhaps more a reflection of my personality, but I think that routine is critical for both parents of children with cochlear implants AND for the children themselves. It is often said that children need certainty and boundaries. I think there is some truth to that, particularly when they are dealing with the added layer of learning to hear and speak (over and above what their peers are).
Nowadays we have a lot more fluidity in our family’s lifestyle. But there are routines, like regular battery changes, that facilitate that rather than cause chaos.
My advice to parents starting a cochlear implant journey with their child is to establish routine quickly… for the sake of your sanity, your child and your marriages.
Five things to prepare for your child going into surgery
1. Think about the days after the surgery. There is nothing you can do regarding the surgery and the immediate after surgery will be unpleasant. You need to drop your head and charge on through. So plan something cool a few days after the surgery and focus on that.
2. When your child goes into surgery to get their CIs, leave and get the surgeons to call you to come back when it is done. Do something like go for a walk round a big park or go to a museum or anything. Keep the mind busy with other stuff.
3. Take spare clothes for yourself. Your child may chuck up on you.
4. Have button up PJs and shirts for your child. The head bandage makes T-shirts impossible.
5. Get your child a present – like a new doll or teddy bear or something they will really love – for after the surgery. Something to be super positive about. Its good for them to get their minds back into positive land quickly.
Items still to come in the future…
- Great iPad apps
- Great resources
- How to make a temporary drying kit
- Nammu Hats rock
About the author: Sym Gardiner has a six year old daughter who has profound bilateral hearing loss. She was simultaneously implanted just before she turned two years old. Sym is the editor of 2ears2hear. He has active in promoting the availability of bilateral implants for children in New Zealand. He is a contributor to the Cochlear Implant kids community in the Wellington region and the national Cochlear Implant community.