When I began this blog in 2008 special needs mom was not on my list of titles. Hearing loss was the furthest thing from my mind. Silence was something I craved with two healthy rambunctious young children, but it never ever occurred to me that it would become a diagnosis. Then in 2012 life as I knew it slowly began to turn upside down as it was revealed that my two year old daughter was in fact living in silence. That was two years ago. I've cried, I've grown, I have learned so much, and still have a lot more ahead of me. It would be my hope that some of my ramblings, as I feel my way through this uncharted territory, would be an encouragement to someone else along the way.
Some of this stuff can get super duper boring. This isn't exactly the award winning Mr. Holland's Opus we're talking about, but if your interested in our journey and how deafness has become a part of not just SJ's life, but our life as a family, I'll start with a little Q & A.
1. Can SJ hear anything at all?
No. She has hearing devices that allow her to hear pretty well, but without them it's basically zilch.
2. How did you find out that she was deaf?
It started with a two year evaluation where they referred her to an ENT. The ENT then referred her to an audiologist. The audiologist did an ABR test (auditory brainstem response) which concluded that she could hear very little. At that time she could only hear something like fireworks. Maybe. If they were close by and loud. Even then it would be muffled.
3. Does she have hearing aids or a cochlear implant?
She had a short run with hearing aids, but for over a year now she has had bilateral cochlear implants. I have talked extensively about the devices, our decision, the pre-op, the surgery, and all the aftermath on this blog if you are interested in learning more.
4. What is the cause of the hearing loss?
I had to wait a while to find this answer. Some people never know, so I am grateful to have the knowledge that there is a genetic mutation called connexin 26 and my husband and I are carriers. We have no other hearing loss in our family, but we have a one in four chance that any of our kids will be deaf. I explain more about the genetics and all that here.
5. Why did it take so long to find out that she was deaf?
A lot of people are confused by this because there is a mandatory newborn screening that tests hearing in the hospital. However, SJ was born at home. Once again, I wrote a full post going into detail on what I have been through because of this. Rachel Coleman of Signing Time even read it and shared it with some of her followers!
6. Does her hearing loss or implants exlude her from certain activities?
No way. SJ can do pretty much anything she dreams of doing, although it may take more effort on her part. She does take her implants off when she sleeps, swims (although sometimes she wears them, there are ways around this), bathes, or goes through a metal detector. It's also very difficult to carry on a regular conversation in noisy environments, but from what I understand there are ways to make it manageable. I've also been told that she shouldn't scuba dive, do certain roller coasters, or MRI scans. Other than that it's game on.
7. Does she know sign language?
Not fluently, but my whole family knows some and we use it every single day to communicate, especially in noisy environments. ASL was technically her first language. For three years that was her primary way of communicating. We'll probably continue on in this, but it's been put on the back burner for now while she is learning speech. In other words we sign, but we aren't actively pursuing learning more at this time.
8. Is she a part of a deaf community?
Oh, touchy subject. I have written about my interest in Deaf culture and how I would love to be involved in the deaf community myself, but it hasn't been that easy to get connected. On the other hand she has tons of deaf friends. She spends time with deaf children almost everyday, but it is through her deaf oral school and so they all have cochlear implants and can speak.
9. Can SJ talk?
She is learning. At four years old she is extremely far behind. Right now she knows a few hundred words and can make approximations that are some times very difficult to understand. I post frequent updates about her progress and it's predicted that she will be able to be mainstreamed in four years. Until then it is full time school and year round therapy to help her get to where she needs to be.
10. What advice do you have for other moms going through this or something similar?
First of all if you suspect that your child has hearing loss, even if they have had testing in the past go to your doctor or see an ENT. It can't hurt. From there get connected with an early intervention program. They are available all over the country. This was an absolute lifesaver for me, I promise you that, and I still keep in touch with that initial team that walked me through that first year. There are support groups online and special schools available too. Don't be bullied into getting treatment through the public school system. I am still learning a lot myself, so I don't have a ton of advice, but I can tell you that SJ hasn't let her hearing loss hold her back one drop. She is well adjusted and adapts in a way that is nothing short of miraculous. She has done a dance class, swim lessons, Sunday school, children's church and school plays. She doesn't seem to know that she is different. She has a healthy self esteem and a very independent spirit. I've had other moms that are ahead of me assure me that it gets easier, and so I am going to go ahead and pass that wisdom along too for what it's worth.
Links Related To Hearing Loss
As if that wasn't enough information her are a few more blog entries related to SJ's deafness…
If you want to learn some of the signs my family knows check out my tips and links or our signing vlogs one, two, and three
I have actually enjoyed delving into the way that our minds decode and interpret language. There is so much we take for granted when it all just comes together so effortlessly. Here are some blog posts that I've written about it.
The Science of Language
Building a Language
Here are some blog post all about the Cochlear Implant
Our decision to Implant
How to Prepare for the Cochlear Implant
The First Year With Cochlear Implants
Getting a Haircut
And lastly here are some of the latest entries chronicling SJ's current progress and our personal journey
Unfiltered Thoughts From a Special Needs Mom
The Littlest Christmas Star
Ebbs and Flows
The Year She Said Birthday
I Want Apple Juice
SJ's Latest Evaluation
A Progress Report
SJ's Christmas Message