So the day after my daughter turns thirteen (gasp a teenager), it is my two year activation anniversary. Two years ago today I heard beeps, tones, tinny voices and had faint impressions of words being said. It was a fairly normal activation, and one that is most often everyone’s activation. I was fully prepared for it, and my expectations were low, so I wasn’t disappointed in not having a Rock Star activation. A Rock Star activation is defined as hearing normal sounds and speech, and comprehension of speech.
Activation is when the audiologist turns on the implant with the processor and program your processor to stimulate the cochlea. A good audiologist will program the right amount of volume, balance the electrodes, and sure you aren’t having facial twitching, or discomfort. Mapping sessions are what follows in the weeks, months, years after, to keep you hearing as effectively as possible.
I’ve come a long way since that day, and I am very pleased with the results and I know my decision to implant was the right one. I have been fortunate to become part of an Auditory Verbal Therapy study since last October, which has added more information to my knowledge banks and helped me with understanding my toddler more easily. It’s been worth the journey even with all the ups and downs over the past two years.
I’ve been reading numerous posts in my Facebook groups about people wondering what to expect, and having too high expectations going into their activations. Some come away disappointed and upset, having been unprepared by the audiologist in what to expect. Many of us who have experienced the process already have been busy reassuring, encouraging practice, and cheering the wows that start coming after those initial days.
I want to say to those awaiting activation the following:
— Keep your expectations realistic. You will hear beeps, tones, ringing (tinnitus), faint impressions of words and environmental sounds in the first week.
— As each day and week pass, you will realize what you are hearing, little by little, those little wows pile up.
— Big wows start coming with more mappings, and practice.
— Practice, practice, practice. (Link to apps and sites on the blog)
— Patience is the key word here.
The average is three months before things become recognizable and normal sounding. Everyone’s activation and progress is different but this is the average, and realistic for the majority of people implanted. The propensity of the media to inaccurate represent these activations, and the process it takes to become “hearing” leads to unrealistic expectations and dashed hopes. The media needs to do a better representation of the process it takes for the patient to achieve the full measure of success with their implant.
For infants and toddlers, it is different. While they hear beeps and tones as well, understanding what they are hearing isn’t as quick to come. The reason is because they are starting from ground zero. Their hearing age starts from the date of activation, rather than from birth as most babies are. It’s hard for parents and audiologists to know what is happening inside these little ones’ heads, so it is easy to assume it isn’t working. Many parents aren’t told this and have too high expectations for their children.
The truth is, they have a longer road, as they not only have to identify environmental sounds, and speech sounds, but also learn to turn those into speech, words, and communication. Quite a few parents have been told to choose between signing or speech, or no signing and speech only by audiologists and speech therapists. Some obey and do speech only and regret it, others choose sign, and others choose to do both.
These children need both sign and speech, and should have access to both forms of communication, and both communities. It boggles my mind to learn of parents being told:
— too young to learn sign (never),
— signing delays speech (hogwash, if it helps hearing children, it helps deaf children),
— too hard to learn two languages at once (hogwash, studies prove the best time to learn dual or multiple languages is before age seven)
— signing is too visually distracting so they won’t focus on the word spoken (again, hogwash. Signing gives a visual cue to the word spoken)
This has to stop. Parents need to be encouraged to give every means of communication available to their children, deaf and hearing included. Audiologists, speech therapists need to give true, realistic facts, and all the information parents, and patients need. It’s a difficult decision to implant, and the road after is long and difficult for many. Support needs to be given by everyone in the community, deaf, Deaf, HOH, as well as hearing. Communication and information sharing needs to occur, for everyone to succeed.
My parents and I asked questions over the years, and as I became an adult I advocated for myself, I shared and talked with others, all of which was crucial to my success, both before and after implantation. Without the knowledge I had, my last two years could have been much harder.
So after two years with my “new” hearing, I can honestly say it was the best decision I made for myself.