HELP! My Child Isn’t Making Progress with a CI!

I hear the comments in real life from parents all the time, get them in my email, and see them on various message boards, listservs, and social media sites.  They usually follow the same pattern:

“My [son/daughter] has had a cochlear implant for [X months/years].  [He/she] is only saying [few] words/sentences.  [He/she] isn’t reacting to sound like we hoped.  What do we do?!?”

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Yikes.  It’s a scary place to be.  After all the decision making, surgery, and activation… things are just not going the way they should.  But what is equally scary (to me, at least) are the well-meaning but ill-informed comments that usually follow:

“Don’t worry about it.  He will be fine.”

“My cousin’s sister’s uncle’s daughter’s best friend didn’t turn to sound until she was ten and now she’s a Rhodes Scholar.”

“My son with normal hearing didn’t say a word until he was five and then he started speaking in full sentences.”

“Each child progresses at her own pace.  She will catch up.”

I get it.  I really do.  It’s great to reach out and provide support and a virtual “hug” to a parent at their lowest point.  But when we dig beneath the words here… is there any truth to them?  As a professional, I’m going to have to vote no.  While yes, we do see individual differences in children’s rates of progress, there are still important developmental norms that should be met if a child is making appropriate gains.  And yes, I’m sure there are cases of children who had incredibly delayed development and then somehow miraculously caught up, but it’s not worth gambling your child’s future on the hope that he will be one of them.  Everyone likes to throw around the anecdote that “Einstein didn’t talk until he was five” but guess what?  Your child is not Einstein.  He might be adorable/brilliant/bright/precocious, but he’s NOT Einstein (and even if there’s a .0001% chance that he is, intervention won’t hurt!).

So these are the facts on the ground: the child is not making progress as expected with a CI?  What do we do now?  Pull the fire alarm?  Change communication methodologies?  Give up the CI altogether?  While I don’t believe in sugarcoating the reality or telling parents that slow/no progress is in any way “okay,” I do think there are many, many things we can do to troubleshoot a situation like the ones above.

First thing’s first.  What do YOU want for your child?  You as the parent have a right to decide which communication modality and outcome is best for your child and your family.  How do you envision your child communicating at age five?  Fifteen?  Twenty-five?  What school and social experiences do you want your child to have?  What is the language of your home?  In what language(s) can you provide your child a fluent model?  Different methods work for different families.  All I ask of parents is that they do their research and then commit to their choice 100%.  This article is written with parents who want a listening and spoken language outcome in mind.  If you want your child to become an independent, listening, talking communicator but success still isn’t happening or is happening slowly with the CI, read on…

Check the technology.  First of all, you need to ask yourself, “Is my child wearing his technology all waking hours?”  Then, ask again, “Is my child wearing his technology all waking hours?”  If the CI comes off for nap time and doesn’t get put back on until an hour after he wakes up, the answer is no.  If the child gets a thirty minute “listening break” every time she throws off her CI, the answer is no.  If the daycare or the babysitter or the preschool finds it too much trouble to keep the equipment on and functioning while the child is in their care, the answer is no.  If the CI comes off before bath though the child stays up for an hour more before bedtime, the answer is no.  The brain needs input to make up for lost time.  Any time when the eyes are open and the technology is off is a missed opportunity to get sound information into your child’s brain.  Remember that our brains do incredible things.  They are constantly organizing and reorganizing around the information the receive.  If the information received is visual… guess what the brain is going to do?  The auditory cortex is like a muscle.  You either use it, or you lose it.

Is your child hitting some of the “Red Flags” for auditory development that would lead us to suspect a programming problem?  (You can learn more about clinical indicators that your child’s auditory performance is not what is should be in this free webinar.)  A good pediatric audiologist is worth her weight in gold.  If your child isn’t achieving superior listening thresholds on their audiogram (15-25dB through 6000Hz) and 90% or higher on aided speech perception tests (in quiet and in noise) — get a second opinion.  Then get a third opinion.  Get a representative from your child’s CI company to come to a programming appointment.  Travel to a different center to have another audiologist take a look at the map.  Don’t stop until you are satisfied that your child is hearing her best.  Problems with mapping and technology are a relatively easy fix: there’s nothing organically “wrong” with your child or with the device, it just requires some tweaking, but they can have a HUGE impact on the child’s ability to access sound.  Remember: garbage in, garbage out.  If your child isn’t receiving a clear signal from the CI, or if the child receives a clear signal but only at loud conversational levels or only to a certain pitch limit, this is not enough to develop clear speech and language.

Check your expectations.  When did your child receive his cochlear implant?  What was his previous speech, language, and listening history?  Here is my handy guide to setting appropriate expectations for children with CIs who fit a variety of patient profiles.

On the other hand, perhaps you need to check your expectations because they are too low.  It is not unreasonable to expect that a child with an appropriately-programmed cochlear implant responds to soft speech even through the high frequency consonant sounds.  It is not unreasonable to expect a child to participate verbally in developmentally-appropriate tasks.  If your child’s therapy team isn’t encouraging you to push for your child’s personal best, it’s time to shop around .  Which leads me to my next point…

Check your intervention.  What kind of intervention and therapy services is your child receiving?  If your goal is a listening, talking child and you are receiving intervention services that focus on manual communication… you’re going to get a child who communicates manually.  If your goal is to have a listening, talking child and you are not receiving services from a professional who specializes in developing spoken language through listening… you’re not going to get a child who learns to listen and speak.  Having a team of professionals who specialize in listening and spoken language, set high expectations, and guide and coach YOU, the parent, to help you help your child succeed is key to success.  Not just any SLP or Early Interventionist will do.  You want someone who is experienced and committed to furthering his/her professional development in this field.  If you don’t have a professional like this in your area, contact me.  I can help!

Check your own skills.  Has your intervention team empowered you to be your child’s first and best teacher?  Do you feel confident growing your child’s speech, language, and listening skills during the activities of your everyday life?  This does NOT mean spending a dedicated hour a day with your child at the table, flashcarding him to death.  This means weaving language and listening and learning experiences all throughout your day.

Check the educational placement.  Is your child in a program (either a typical preschool or an auditory-oral school) that emphasizes listening and spoken language communication?  Are you in touch with what your child is working on during the school day?  Do her teachers keep you informed about how to extend classroom learning into your life at home?  If a parent says, “I don’t know what he’s working on,” or, “The teachers never tell me anything,” or, “I have no idea what his school SLP does with him in therapy,” this is a problem.  Find out!  If the school isn’t adhering to your child’s IEP, call a meeting!  Take it to the district level or mediation if you have to.

Check for other issues.  This one is a double-edged sword.  While we know that approximately 40% of children with hearing loss have additional disabilities, in my experience, professionals who have limited listening and spoken language experience are very quick to diagnose things like “specific language impairment” and “apraxia/oral motor issues” in children with hearing loss which really are a code for “I don’t know what I’m doing and what I’m doing isn’t working so it MUST be that the child has another issue.”  Yes, some children with hearing loss have additional issues, and sometimes these additional issues are truly something like apraxia, but it is wildly over diagnosed (because, as I said before, it’s a convenient explanation for a child not making progress, when in reality changing the intervention program or getting appropriate mapping might clear up the issue).  Read up on the evidence behind NSOMEs (Non-Speech Oral Motor Exercises; hint: they are completely unsupported by research.)  It is important to consider all possibilities, but do so with the guidance of a pediatric neuropsychologist, developmental pediatrician, and/or listening and spoken language specialist who has extensive experience in deafness.  We need to walk a fine line between attributing every bump in the road to “the hearing loss” and writing everything else off as “additional disability.”

Check the rate of progress.  Regardless of where your child starts out, with appropriate amplification, intervention, and parent support, he should be moving forward, moving forward, moving forward.  If your child is not making at least six months’ progress in six months’ time (as measured by developmental checklists, standardized tests, etc.), then something needs to change.  Progress is a great metric because no matter how delayed the child is, something should be changing in a positive direction if all of the other pieces of the puzzle are in place.

Yikes.  That’s a lot to consider, right?  While I wish I could tell every parent who asks me this question that everything will be okay, go home, put your feet up, it will all magically happen… that’s just not the case.  But it’s not all doom and gloom either.  By going through the troubleshooting checklist above, parents and I are usually able to identify a few issues that can easily be resolved to help us do some course-correction and get their child back on track to success.  It may take some tough changes, but:  It is possible.  You can do it.