Two Year Activation Anniversary

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.


Random Post of No Import (except to me)

Thirteen years ago, I entered the hospital to be induced with my first child. Scared and excited, and so ready as I was huge and uncomfortable. My best friend came up to support me in the labour room for communication, as my ex is Deaf. Seventeen hours of labour, and she was deemed to big to fit, so off we went for a Caesarean section.

She was pulled out, red, head full of dark brown hair, and squalling at 3:15 am, May 21, 2001. It was Victoria Day that year, so the lucky girl has a long weekend on or around her birthday. I’ve been a mom since I found out I was pregnant, but that moment made it real.

The time has gone by too fast, and my daughter has blossomed into this beautiful, smart, caring, loving, young woman. She is a terrific big sister to her two brothers (we celebrate the middle child’s next week, and he will be nine) and always helping with the youngest. I am so proud of how she has matured, and she is mature for her age. She is turning out to be exactly what I had hoped, and imagined as I carried her.

I have no trepidation a about her teen years even though I tease her endlessly about it. I’ll be one of the lucky parents to never have to worry about their teen. Knock on wood!

So at 3:15 am, I will send her a text, and wish her a happy birthday. I’ve always woken up at that time, and either kissed her as she slept if she was with me, or sent a text.

Message to the Media

As a child, I was the subject of many articles in my local paper, the Kingston Whig Standard. I was even part of the Through the Sound Barrier documentary, and local CKWS news segments. This was during the mid to late seventies in Kingston, Ontario. I have lost those articles to flooding, but hope to find them to share on my blog.

That said, I have a huge tremendous peeve to address. The media has a horrible, horrible tendency to inaccurately present facts, to sensationalize achievements when it comes to cochlear implant activations. Case in point: this video of a woman’s activation, which she gave me permission to use. Gift of Hearing.

She posted the link in our Facebook group, and I commented the following:

I hope the media made sure the public knew that this is an atypical activation. My biggest peeve is they make it out to be a cure and that everyone hears automatically, when the reality is, most of us have to work at it and wait for several months or longer to achieve the full access the CI gives.

Her response:

I know. I told him that over and over. Both audiologists told him that. I didn’t see that on the footage that he kept.

Adding: it does say it takes a year to rehab, however it is still a bit inaccurate, because everyone is different, and children in particular start from ground zero and often have a longer process than adults

Far too often the reporters sensationalize these events. It gives parents unrealistic expectations as they implant their young children. It gives other adults the impression that they too will have what is called a “ROCK STAR ACTIVATION”. This is an atypical activation, not the norm, and the ones that have activations like those are extremely lucky.

Mine was not the same, in fact, mine was the norm. All I heard were tinny voices, that were faint impressions of words in my brain, and random sounds. It took three months, which is average, before voices sounded normal and I could differentiate between male or female, or even pick it up thirty feet away. Longer still for my brain to acclimate to all the sounds. In fact it’s still working on building the auditory memory bank. With AVT, my ability to comprehend speech is improving, and with more work, I may not need to rely on lip reading, logic, guesswork to have conversations on the phone, or across a room, or from one room to the next.

My message is this: be accurate, be realistic, and yes celebrate a great achievement like this woman’s activation, but please for heaven’s sake, don’t sensationalize something that is not the norm for the majority of adults who get the cochlear implant, and certainly is not for children implanted. Don’t give unrealistic expectations to these families. It would be more accurate to follow the progress of several people, to show the difference in experience and achievements.

Rant over!

A Statement

I am still amazed by the amount of bigotry, anger and lack of open-mindedness existing in the Deaf community. I know some of you will not agree or become offended by what I am about to say. That’s life. However in recent weeks I have witnessed in my online Facebook groups a shocking amount of ignorance, misinformation, bigotry, and close-mindedness of the Deaf people posting.

It is 2014 for goodness sakes! We have at our disposal a greater wealth of technology in assistive devices, hearing aids, cochlear implants, phones, tablets and computers than we did even thirty years ago. We have rights. We have supports that we did not previously have. We have choice in how we are educated, choices our parents make based on information gathered or the advice of their child’s audiologist, or on what local schools and programs are available. These are difficult choices any parent makes in raising their child.

Yet, after all this time, the topic of ASL or Cochlear Implant are still hot button topics. Much of the Deaf community are still against the use of the cochlear implant, and still view parents who choose not to use sign, as taking away from the Deaf culture. I mean really? Seriously? I was raised oral, I admit that. However I don’t believe my parents raised me oral because of their bias towards sign language. I am pretty sure they would have used it, had I needed to. I did not, because I apparently hit the ground running once I got my hearing aids and never looked back.

I read a blog post yesterday, Conspiracy Against the Deaf that I couldn’t finish reading. It was so full of rage and venom that I actually blasted the writer for dragging into 2014 a history, that while it is tragic, horrifying and part of Deaf History, no longer is relevant in today’s society. The writer claimed there is no objective journalism (I disagree) and that he was expressing his feelings. I responded that it was a disservice to the Deaf today, because we have overcome that past, that bias and bigotry for the most part and that he was only spreading bigotry towards the hearing community, none of whom are responsible for our tragic past.

He didn’t offer solutions. We as deaf people need to be more visible, more vocal, more active in the community at large. We have to stop hiding within our community and Deaf Culture. It is time to step into the present, and work towards the future. Our children have the greatest access to technology than we had as children. Let’s applaud that. Let’s cheer these children on their successes because they have the greater chance to succeed than many of us did. Don’t fault the parents for choices we may not agree with, they have a hard enough time making those decisions. We need to be available, approachable, and willing to educate, to have the life and accessibility we deserve. Only we can show how helpful sign language is, and how children can succeed having access to both sign language and the spoken language.

The cochlear implant is not a cure for deafness. It’s a tool, to give us and our children a better quality of life by being able to hear and communicate. It gives us access to a sense that is very much needed for survival. One day, they may be able to restore hearing fully to a deaf person. It may be a hundred years from now, but we should cheer these leaps that we have made in that direction, not accuse the hearing community of trying to fix us, cure us of by perceived disease or a disability.

It is time to move forward. Stop the bigotry. Stop the audism even within our deaf community. We blame the hearing for bigotry and audism, but many of us are just as guilty. It is time to step into the present and look forward to the future. The past is the past, learn from it and move on. Offer solutions, push for better accessibility, and become more visible, and educate the world at large. Only then will bigotry and audism cease to exist within our deaf community, and hearing community. (if the above link does not work)

An Addendum:
I personally think many of the deaf need to get into the present, and get out of the past and get with the times. The landscape of our community is changing, with previously hearing people joining our ranks through disease, through no fault of their own and need OUR HELP AND EXPERIENCE to adjust. More children than ever are born to hearing parents who need to be welcomed, no matter what decisions parents make on their communication development or use of hearing aids and CI. They’re just as deaf as those born to deaf parents.

We are letting ourselves become more of a minority by staying within our groups, and not welcoming all others with a hearing loss, no matter if they have hearing aids, an implant, use sign, use speech, etc.. I have never felt part of the deaf community, because they didn’t allow any who happened to speak and not sign into it. That’s got to stop. So much whining about the invisibility of our community and people like me aren’t welcomed into it by virtue of the fact I do not sign.

For change to happen, it needs to start within first.

Should I Be Ashamed?

I’m ashamed that I haven’t worn my processor much since the beginning of April. Nor have I practiced my AVT homework either. I’ve been suffering from chronic headaches and migraines thanks to the weather system, and teeth grinding I’ve been doing. I also had a tooth become infected which caused additional pain and discomfort, unfortunately on the implanted side. Sound aggravates my migraines and headaches, so I was taking care of myself as best as I could. I couldn’t take the hearing aid off because I needed to hear my toddler.

Three weeks ago at my last appointment, I admitted this to my therapist. She chastised me for being hard on myself. We did some work, and ironically, despite lack of practice or use of the processor, I still made improvements. Shocking. I suppose that my brain got some work by using only the hearing aid and I ended up training myself just by listening to my toddler.

So why do I feel ashamed and embarrassed to admit that I have not practiced or worn my processor since? It’s because I’m too hard on myself and have high expectations of myself. I feel guilty for not actively practicing with my iPad apps or with my family on my homework.

I was to see my therapist today, but postponed it due to the pain I have. The antibiotics help, but I am still dealing with the pain. I feel guilty for cancelling because I want these sessions, and I need to keep the AVT progress going. I struggle to allow myself the right to take care of my needs, since so often I cannot with being home with our toddler.

I am approaching my two year activation anniversary, and I expect I will have a check up, and testing to see how far I’ve progressed. I haven’t gone from zero to sixty like I wanted, so I am nervous about how my speech comprehension tests will result compared to a year ago.

So later today, I will be going to a quiet spot in the house and practicing with my iPad apps, and will also try the new Angel Sounds app I downloaded. It’s time to get back to work and push through, as after all my time left in this study is nearing to a close. I have found it has helped immensely, so I hope the goals of the study proves beyond a doubt that adults need AVT just as much as children do.

So I am going to try to stop feeling ashamed, embarrassed and guilty and give myself a break for taking care of my health first.