This is a common question (more like agonized wail) I hear from parents, both in person and online. You go through the entire process of CI candidacy and surgery, and then… the child doesn’t want to (or just plain won’t) wear the cochlear implant processor. Where do we go from here!?!
The first thing to do is figure out your position as a parent. Is hearing in your household optional or essential? Neither one is right or wrong, but your answer to this question will lead to very different plans of action. If you are clear on your reasons for pursuing a cochlear implant for your child, then you can address the situation accordingly.
If hearing is optional in your household, then not wearing the cochlear implant processor is not an issue. It should be noted that, if you want a listening and spoken language outcome, “hearing optional” is not the choice for you. If hearing is optional, you’ll want to pursue a visual means of communication to give your child language access when he is off the air. Just know that the results you receive will be very different than those of a family for whom hearing is essential.
If hearing is essential in your household, then not wearing the cochlear implant is not an option. You must treat CI use as you would any other non-negotiable decision parents make for their children: brushing teeth, going to the doctor, wearing a helmet when biking, and so on. That doesn’t mean it will be easy, but keep the end goal in mind and press on!
Once you know where you stand, it’s time to troubleshoot and get to the root of what is causing this CI avoidance.
Is it pain?
No parent wants to see her child in pain. Cochlear implants should not, let me repeat that, SHOULD NOT, be painful to the wearer. Do a visual check: is the incision site raw? Is the magnet strength too high and creating pressure on the scalp? Does the ear hook need adjusting because it’s rubbing the top of the ear raw? If you see anything out of the ordinary, call your ENT.
If the child has a pained reaction when you put the CI on even though noting is obviously wrong to you, do a little experiment: put the CI on turned off. If the child still reacts as if he is in pain, then you know the cause is behavioral, not physical, in nature. More below on how to handle this…
Is it programming?
Is your child’s CI map current? As children go through growth spurts, hearing needs change. If your child is refusing to wear the cochlear implant, a trip to your audiologist (and a second opinion from another skilled pediatric audiologist, if possible) is essential. It may just be a matter of adjusting the programming, decreasing the sensitivity, or making special programs for noisy environments.
Is it situational?
Is your child willing to wear the CI in some settings but not others? With some people, but not with others? Take a few days and track times of CI use and non-use. Do you notice any patterns? Often, I have parents say, “He’s perfectly willing to wear the cochlear implant in therapy but he refuses to wear it at home!” That, to me, is a clear indicator that CI refusal is, for this child, a learned behavior. Kids are smart — they know what they can get away with, and with whom. If, from day one in therapy, the consistent message has been, “You wear your cochlear implant,” then the child doesn’t know anything different in that setting. On the other hand, if the message has been inconsistent at home, the child will pick up on that and behave accordingly!
Do an ABC analysis.
ABC stands for antecedent – behavior – consequence (more on that HERE). What is happening before the child removes the CI (or, if it never even gets put on, what is happening when you attempt to put it on the child)? We know the behavior here — taking off, or refusing to put on, the cochlear implant processor. What is the consequence? How are you reacting to the child removing the CI? What does the child get out of this behavior — attention? Getting out of a non-preferred task? Getting you worked up? Remember that none of us do anything without a reason, so ask yourself, “What is the child getting from this behavior? What is motivating him to do it again? What’s the payoff?”
What if it’s really tough?
Absolutely — this IS tough! If you’ve tried everything above (and enlisted help from other parents, caregivers, teachers, and therapists to get on board with the plan) and you’re still struggling to help your child use his CI all waking hours, it’s time to call in reinforcements. Your child’s pediatrician, teacher, and/or Auditory Verbal Therapist should be able to refer you to a behavioral therapist who can help you solve this tricky problem. Remember, there is no shame in asking for help when you get stuck. It’s better than staying stuck, and your child’s future depends on it!
Elizabeth A. Rosenzweig 