Our Hearing Loss Journey Part 3 - Speaking vs Signing

*This post has been edited from its previous version.  I originally posted examples of parents sharing their struggles with this topic - all names and pictures were blurred and marked out.  However, some people did not approve, so this post was edited to not include those.  I completely understand and am very sorry to anyone who was offended.  I hope no damage was done to anyone, as a fellow parent on this journey, I would never want to cause more stress to anyone else.  Thank you.*

When we first learned of our daughter, Blakeley's, hearing loss we did what most parents do - we did whatever it took to fix what was wrong with our child, if possible... right?!  Isn't that the thing we want to do?  If they are sick, and medicine will cure them - you give them the medicine.  If they have a condition where surgery could fix it - you choose the surgery.  If your child cannot see, you get them glasses.  Well, if your child cannot hear everything normally, you want to give them whatever is available to give them the most opportunities in life...

I had never questioned this kind of response in parenting until my daughter was diagnosed with hearing loss.  She wasn't profoundly deaf, so hearing aids were an option.  Our insurance covered most of the cost (praise the Lord - we have met so many families that have to wait for so long because they have to pay $9,000 out of pocket!), and we had met so many other families that had chosen this easy and readily available option.  But as we entered the "hearing loss" world more and more, we soon encountered the "Deaf Gain" community.

What is the difference, you may ask.  Well, it really is just a change of perception.  Basically, the difference is when you go from only focusing on the hearing deficit your child has at diagnosis and shifting to welcoming all of the community (and benefits of that community) that a Hard of Hearing or Deaf person gains with their disability.  Yes, a HOH person may not be able to hear certain pitches of sound, so there may be loss of opportunities in the hearing world, but they will gain connections with others like themselves that they may never have otherwise.  The people in the Deaf Community are loyal, and they are fierce.  They are strong, because they have to be.  They are proud of who they are, just the way they are, because many times everyone else treats them as if they are lesser than - less able, less intelligent, less valuable... and nothing could be further from the truth.  And they know how to advocate for themselves and one another.  So, not just "hearing loss", but also "deaf gain".  It is a pretty powerful shift that I resisted at first, disagreed with for a while, but now see the beauty of with gladness.

I shared in previous posts about how I felt strongly that we should learn ASL (American Sign Language) as a family as a support language for the present, and a backup language for the future.  If it was likely she would lose more hearing, then I didn't want her to have to make a huge transition as an adult that would be so easy to prep for as a child.  So we enrolled in an ASL class at our local library.  We also downloaded sign apps on our phones, watched signing shows for children at home from Youtube, and enrolled for online courses (which some are actually free to families of children with hearing loss - pretty awesome!).

In our ASL class, our teacher is a young woman who was Hard of Hearing as a child who later lost the rest of her hearing in college.  She had not been allowed to learn sign, she was forced to speak and wear hearing aids, she was in a school where no other children had hearing loss... I knew MANY families who had similar stories, except most did use ASL as a supplemental language (for when hearing aids were not being worn or in crowded/loud places where hearing is even more difficult).

Until I heard her tell her story, from her point-of-view, I had NEVER considered "forcing" the word I would use on teaching kids with hearing loss how to speak.  I learned that because I am a hearing person, I think like a hearing person.  I am not offended by the term "hearing impaired", because I only think of it as the medical term it is.  I am not upset when I see a child with a cochlear implant, because I see it as an opportunity to get back what a person would normally have.  And until I took this ASL course, I never knew that to many in the Deaf Community, it is a statement of "something is so wrong with you, that brain surgery is necessary to change it".

I have never been a person with hearing loss.  So I am not used to receiving the message that just being me, how I am, is wrong, is something to fix.  I am not used to knowing that I am different than everyone else in my family, just being the way I am.  I didn't know that there are families of multiple deaf generations who do not pursue assistive technology of any kind, nor do they make their children learn to speak.  They all sign.  They are all accepted in their family, just as they are, without trying to fix anything.  My eyes were opened, and my mind was puzzled.

And I'm not saying that learning these things means that I now think someone should never get a cochlear implant or learn to speak.  It just means that these decisions are more difficult than "there is a problem, let's fix it.".  Every decision made by each individual family unit for each individual child, while almost always made with good intentions, may carry with it deeper messages to your child's inner voice.  Just one more thing to add to the list of to be mindful of, to consider, to fight... None of these decisions are simple, nor are they always right or always wrong... it is hard.

So we decided that we would offer our daughter as much as we could of both worlds, and someday when she grew up we promised each other and her that we would be fine with whatever world she chose, even if that meant both worlds or the one we were not naturally a part of.  We learned about silent dinners, deaf preschools, deaf camp, and many other events/places where hearing loss is the normal and hearing is the rare thing - sometimes even the looked-down-upon thing.

In order to be able to give our daughter as much of both worlds as possible, we would have to do many things - learn sign and sign at home, to all of us in the family, often.  We would need to attend silent dinners and other events where signing would be the form of communication, putting ourselves way out of our element.  We would also have to take our daughter to speech therapy, provide her with technology that would help her hear the world around her (fill in her hearing deficits), and actively participate in practicing her speech all day, every day.

It was exhausting just thinking about it.

We loved our sign class.  We loved the fun of teaching what we learned to our kids, and it was awesome to watch them use what they learned.

We found a speech therapist at a non-profit that offers free services to children with hearing loss under the age of 3!  The clinic is called Hearts for Hearing, and our Auditory Verbal Therapist is Jenna.  She is amazing.  And she loves our Blakeley girl.  Blakeley is feisty and doesn't always play along.  She has her own ideas, but Jenna patiently waits, reiterates, and sees the pay-off most of the time.  Auditory Verbal Therapy is speech specifically designed for those with hearing loss, and with children it is play-based.  My older children have received typical speech therapy from some outstanding therapists, but their sessions are usually done without me in the room.  They do 28 minutes with the therapist without me, and then the therapist summarizes to me what they worked on, how the child did, and how to practice at home in the last 2 minutes of a total 30-minute session.  It is not like that with AVT.  Jenna and I sit on either side of Blakeley, and whatever Jenna models, I repeat, and then we wait for Blakeley to repeat it.  I love seeing and doing exactly what the therapist does, so that I know exactly what to do at home!  I love the practice in a one-hour session of being so hands-on, so that the way I play with Blakeley at home is naturally molded by those practices.

But it is so incredibly strange to feel like I have had to lie, or omit the whole strategy we are implementing as a family, to both worlds.

To those we have met in the "deaf gain" community, we have emphasized our desire for Blakeley to be accepted as she is (which we really do want), that we would want her to find connection in her life with others who understand her experience (which we really do), and that we would support her no matter what communication mode she chooses when she is old enough (which we think we really do - that would definitely still be so hard if she chose to only sign, but we would try to do the selfless thing).

To her speech therapist we have emphasized our desire for her to hear and speak (which we really do want).  MANY speech therapists do not approve of signing with children who struggle with speech.  They see it as an intrusive crutch, an interruption to the speech process, and something that holds a speaker back instead of encouraging speech.  Some studies show otherwise, some support them.  Some speech/audiology clinics used to or even still do require all patients/guardians to sign a contract promising not to use sign language!  I gave myself away on accident several times when I would instantly sign "drink", "eat", or "all done" to Blakeley when she would be fussy and not cooperative with Jenna during a speech session.  I would instantly stop and try to act like it hadn't happened.  She never grilled me about it, but she has occasionally reminded me to "give verbal cues and wait for a response before giving a visual cue."  Thankfully, she has never told me not to use ASL, but obviously as a speech therapist, it makes sense that her priority would be verbal speech.

So I have felt torn for the past 6 months, acting the part that my current environment prefers.  It has been confusing sometimes.  It can be frustrating.  But the truth is that I see both sides.  I totally understand where they are all coming from, so I have played along to their preference because I want both.  And Blakeley is so young.  I felt it would be irresponsible to wait until she is old enough to choose how she wants to communicate, because her ability to learn both languages at her current age is so strong!  Children learn language so quickly, and by the time she is mature enough to choose a world she prefers to live in, her ability to soak up new language will have diminished greatly.

We are not alone.  I have heard many other parents in our situation speak of the same struggle.  Others completely disagree that it is a struggle at all - they want their child to hear and speak, so why complicate things?!  Or they want their child to feel completely accepted as they are without interference, so why complicate things?!

And I totally see where they are coming from too!  I get it.  And when Blakeley is old enough for all this to be explained to her, I hope she'll understand both sides too.  I hope she will see the love that our struggle and choices have been bathed in.  And I have prayed that she will become the well-rounded, contributing, empathetic, and accomplished woman that we have envisioned when looking at her future, in our dreams, and in our hearts.

Be looking for Part 4 soon - this journey just keeps getting crazier!

-For insight into the experience of getting her diagnosis, Part 1's link is here.
-To read about the process of getting her hearing aids, Part 2's link is here.