Oct 28, 2008

It's NOT a Sprint...It's a Marathon!

Ok, so you have made it through surgery, have your team in place to help you with your auditory goals, and it all went by in a complete blur!

Now you are ready to go! Give me goals, GIVE ME MORE GOALS! Let me get language in this child, not today, no yesterday, must get language in, must get language in, must get language in....

Yes, it is true that the major part of the cochlear implant process is the work you do with your child after the surgery: the learning to listen, the providing opportunities for new language development etc.

BUT you are not a machine that one can program and then let loose to do your thing. You are a man/woman, a husband/wife, and a parent, oftentimes, more things to more people than just your child with a hearing loss. Don't forget the many roles you have and the fact that you are not a machine!

As one very wise mother told me very early in our journey, "it's not a sprint, it's a marathon." You can't keep going at this frenetic pace all the time, you will inevitably burn yourself out and then what good are you to the family you love?

If on the occasional day you wake up and you feel like life just dropped a huge concrete block on you, roll with it. Don't beat yourself up over the fact you should be doing this or that listening activity with your child. Cut yourself some slack, head to the park with your beautiful child and just eat ice-cream together or enjoy whatever other favourites you might have. Time spent just being, is also very important.

You know that if you feel like you are having a bad day and try to ignore it to work on those goals, your child will sense your heart isn't it, and you will just be wasting your time. Let it go for a day, recharge and get back to work with gusto the next day.

Don't forget too that there are many ways to provide listening opportunities for your child that don't involve sitting your child down and working through specific things. There are many, many ways to tap into their interests and "play with them". Well, that is how they see it, meanwhile you are building in language without them even noticing - that might be the topic for another blog, another time : - )

We parents have a built in guilt switch and so we beat ourselves up every time we feel we are not doing enough. At the end of the day all you can do is your best and your best will differ at different times with the things that life throws at you from time to time. Work with your team, let them guide you with their professional opinions on how your child is doing, not based on an off the cuff comment from another parent who probably has no clue.

Be kind to yourself and know that your child is already so unbelievably blessed, he/she has parents who care enough to educate themselves as much as they can, that is why you are here reading this. Your child already has the best advantage of all - YOU.

Posted by Naomi

Oct 27, 2008

Which Cochlear Implant Brand Should I Choose For My Child?

Decisions, decisions... One of a parent's most agonizing decisions is whether or not to get a cochlear implant for their deaf child. No sooner does one decide to go ahead with a CI than another confusing choice appears: which brand of implant to choose? It can be overwhelming. The differences between them seem to require a degree in biomedical engineering to understand. To make matters worse, your child's audiologist at the CI center reassures you that all brands work great and that the choice is entirely up to you and should be based on what will "work best for your family." But how is one supposed to know what will "work best for our family?" What if it doesn't work at all? Not working at all seems unlikely to those of us whose children already have cochlear implants, but, this can be a very real concern for someone making what seems like such a weighty decision on behalf of a child, the love of their life.So how does one choose? The audiologist's reassurance is worth noting. All brands do work to a high degree of success, and if they didn't, the implant center could not, in good conscience, offer them! Success depends far more -- even entirely -- on the follow-up care and intervention that a child gets rather than the brand chosen. A child's cochlear implant should be mapped (programmed) regularly. The child should be wearing the implant nearly all waking hours, and parents should be getting regular instruction on how to encourage listening and auditory development in their child. A young brain is an amazing thing, and if all of these criteria are met, the chances of success are very high.

"This is not helping," you say. "I need some guidance here. Help me decide!" OK. First, it's worth figuring out which brands your CI center, and especially audiologist, have experience with. A child, especially a very young one, will not be able to say, at first, what sounds good, clear, etc., so you will be relying on the audiologist's intuition and expertise in making the implant produce the best possible quality of sound for your child. Ask what implants are common among the clinic's patients. Second, look at the devices, both internal and external. Try the sound processors on your child, if he or she will let you, to get an idea of what they might look like. (My son, who has had cochlear implants for 8 years sometimes likes to try the other brands' demo processors on "just for fun" when he's in for a mapping.)

If your child is young, don't worry about whether or not he or she will like the look of the processor when he or she is a teenager. Chances are there will be newer, better-sounding processors with more features available by then -- several times over! Each CI maker seems to release a new sound processor every 4 or 5 years. Also think about which one feels most comfortable and intuitive to you, the parent, since you will be the one manipulating it while your child is young.

If you are still undecided, ask other parents what they like about their choice -- what are their favorite features about their child's CI? Some specific questions include:

* What are my options in how the implant may be worn for a baby or young child?
* How long do batteries usually last?
* What types of batteries do the processors use?
* Is the processor compatible with FM systems and how?

A word of caution here: just like there are "dog people" and "cat people" or "PC people" and "Mac people", there are also "AB people," "Cochlear people," and "Med-El people." There tends to be a great deal of brand loyalty with cochlear implants among adult CI users as well as with parents. And unlike a desktop computer, which can be replaced, once surgery is complete, there is no changing your mind. Naturally, any suggestion by another parent that you could have made a better choice hurts. This is your child, after all, and using the all the information you had and what felt right, you made the best decision you could on behalf of a person who means the world to you. Those of us who are tempted to promote our chosen brand at the expense of another ought to ask ourselves what is our true motivation? Is it out of a sense of insecurity that we want to recruit others to our choice? To reassure ourselves that we made the right one by seeing others make it too? When giving advice, before hitting the "Send" button, put yourself in the shoes of someone who recently made a different choice. Is there anything in what you've written that might offend or hurt such a person, even subtly? If it feels like you might be crossing the line, you probably are. It's also worth keeping in mind that our choice may have been influenced by what was available at the time point that the decision was made. A particular manufacturer may have had the newest device on the market. The options facing parents may be different by now or in another year or two -- things change fast in the CI world, and that's part of the excitement!

In the interest of full disclosure, my son has the Cochlear brand, and I volunteer for the company as a Cochlear Awareness Network Volunteer. I do so primarily because still, not a day goes by that I am not in awe of what cochlear implants have done for my child. I would volunteer for all three brands if I could, though I don't think the other makers would necessarily want me as an advocate because I am not familiar with their products! Last year I was delighted to be part of an foundation that, together with Advanced Bionics, awarded a cochlear implant -- the gift of hearing -- to a young child whose family's insurance would not pay for the surgery.

Perhaps another question to ask parents who have made the choice and whose kids are happily learning to listen, or are accomplished listeners, is how much time do they spend wondering if they made the right choice of brands? Chances are they don't think about it much after it's a done deal, but are absolutely thrilled with what a cochlear implant does for their child.

You can't go wrong!

(For a related story with an implant brand twist, read: The Unexpected - An Adoption Tale)

Lydia is the parent of an almost-12-year-old bilateral CI user who got his first implant at age 4 and second at age 8.

If you would like more guidance on choosing a cochlear implant for your child, join the CI Circle Discussion Group. You can search the archive for past discussions on brand choice or ask anew.

Oct 23, 2008

Paving the Way...

Rachel was born in 1987, before universal newborn hearing screening and before the internet. Her deafness was diagnosed at age two months. We left the audiologist with a diagnosis of a severe-to-profound hearing loss, having no clue what that meant or where to turn to for information. We went through a year of trial and error trying to find hearing aids and a program that worked for Rachel, that would meet our goal for her of having her become a hearing, speaking, fully participating member of the hearing world. When she was 16 months old, we spent a week at the Helen Beebe Center immersion program, became believers in the Auditory-Verbal Approach, and switched to an Auditory-Verbal therapist in Massachusetts, where we lived at the time.

Unfortunately, between ages 10 and 18 months, Rachel lost all of her residual hearing. Thus, although we were enthusiastic about the Auditory-Verbal Approach, it was not going to be possible for Rachel without any hearing. We were fortunate that our therapist agreed to keep working with us, applying the techniques of A-V to a visual oral approach. Rachel ended up being a whiz at lipreading and quickly gained a receptive vocabulary of 100 words. However, because she had no hearing, she did not understand that we spoke with our voices, and so she only mouthed words.

When Rachel was 2 years 3 months old, our A-V therapist (AVT) was speaking with an AVT in Canada, who mentioned that she, too, had a student who was totally deaf, and the family had taken her to New York University for a cochlear implant. This was in August 1989. We called immediately, took Rachel to NYU for tests in October, and the NYU team scheduled her for CI surgery eight weeks later.

We took a leap of faith deciding to implant Rachel. The implant was not yet FDA approved in children but was, instead, in phase III FDA clinical trials for children ages two and older. There was not another child in all of New England with a CI, and so we had no one at home to speak to. When we were in NY, we met a four-year-old girl with a CI who was speaking beautifully, but she had lost her hearing to meningitis at age two, and so, unlike Rachel, her brain had had access to sound before she lost her hearing. We had no idea what to expect, and so few children had been implanted at that point that the NYU team couldn’t tell us any more than that she’d be able to hear environmental sounds.

Rachel received her CI on December 21, 1989. She spent four nights in the hospital, including the night before surgery. This was standard then. A month later, we returned to NY for three days for her initial stimulation. We were thrilled when she responded to sound during the mappings, but we had no understanding at all of what programming her CI involved.

When we were home again, I had so many questions but no one to talk to other than the NYU CI team, and fortunately for me, they were a very small group then, and they readily answered all of my phone calls.

I think back now on all of the questions I had in those early years. Why was Rachel’s head control poor? Did it mean that she had CP? What was the CI surgery like? Did I need to bring anything to the hospital with me? What was the audiologist looking for during the mapping? What was a mapping exactly? What parameters was the audiologist fiddling with? What was the significance of each of these settings? How tight should the magnet be? What response should I expect from Rachel once we got home?

I can only imagine how much more confident and at ease we would have been along the way had I had a resource available like the Cicircle. I would have had parents to go to for information and to calm my worries and fears. The Cicircle listserv itself has served as a tremendous resource for parents over the past 10+ years, but the addition of the affiliated websites makes it even more so. Who better to understand the questions and concerns that parents have than other parents? Who else can anxious parents turn to in the middle of the night and receive answers within an hour when their child has swelling at home after surgery or when the device seems to feel differently than before?

Parents of children born deaf today are so fortunate to live in the information age with information so readily available. To have it all in one place on http://www.cicircle.org/ is even better. Children have already received cochlear implants at younger ages because their parents learned about early implantation from other Cicircle parents. Similarly, it is Cicircle parents who were among the first to understand the benefits of bilateral implants and to pass the word on to other parents. By parents for parents, and, as a result, for better opportunities for our children - This is what the Cicircle has accomplished and what the websites will help accomplish even more.

As a postscript, I have to end this by telling about Rachel today, as well as about her younger sister Jessica, who was also born deaf. Despite having some professionals tell us early on that Rachel would never learn to speak well, she not only learned to speak English well, but she is also fluent in French, won her high school’s foreign language award as a junior, and achieved the highest possible level of “superior” in a statewide French competition for excellence in spoken French. She also won her school’s Faculty Cup award at graduation, an award agreed upon by the entire faculty for excellence in academics, citizenship and personal growth. She is currently a junior in college majoring in travel photojournalism, is an avid traveler who has been to France six times, as well as to Italy and Israel, and soon will be heading off to Australia and New Zealand, all on her own, navigating her way independently.
(Note: Rachel is speaking French in this video)
Jessica is eight years younger than Rachel. She had the advantage of being born to parents who had been there done that by the time she came along. We were living in Atlanta by the time she was born, but we traveled back to NYU in order to have her implanted at age 15 months, nine months younger than the FDA guidelines of age two at the time and 16 months younger than Rachel was when she received her CI. Both girls were then bilaterally implanted in 2004, something we quickly learned the advantage of thanks to other Cicircle parents.

Posted by Melissa

Oct 15, 2008

The Official Blog of the Pediatric Cochlear Implant Circle

Welcome to the official news blog for CI Circle – The International Pediatric Cochlear Implant network for parents.

In 1998 Naomi Higgs (Australia) and Karen Biernat (USA) co-founded CI Circle. CI Circle arose from the need for parents to gain accurate and non-judgmental information about paediatric cochlear implants. The original group started with just 8 members and has now grown to 1700 members internationally.

In the life of each child, it is his/her parents who are there for the long haul – differing professionals may come in and out of their child’s lives but parents are the one consistent that is there all the time. As a result, parents become the keepers of a great depth of knowledge, some of it acquired from reading or attending seminars, and much of it based on direct real life experience. The information generated by this group has provided enormous support to both parents and professionals alike. If you would like to join the discussion forum of this group, joining information can be found here. For a collection of useful resources and to read the blogs of CI Circle parents, visit our website at http://www.cicircle.org/

Posted by Naomi