Episode 2: Confessions Of A Hearing Mom

Host Crystal Hand talks about her experiences being a hearing mom to deaf children, and all the emotions that go with it.  From the day of identification, to the teen years and everything in between, she talks about all the ups and downs of raising deaf children.   Crystal gives practical advise and insight  to parents,  professionals that work with deaf children, and Deaf individuals with hearing parents.  


This podcast is produced and owned by Crystal Hand and not associated with any other company, business or government entity.  "The Other Side of Deaf" podcast and associated websites and social media pages represent the opinions of the host and her guests on the show and do not represent or reflect the opinion of any organization the participants are employed or associated with.  The content here is for information purposes only and should not be used for medical or legal purposes. 

Transcript

Hello!  Welcome back to the podcast "The other side of Deaf".   You either just joined us or you stuck around after our first episode, which means I didn't scare you off .   Last episode, we talked with my good friend Stephanie, who is deaf and she gave us a great starting point on a deaf perspective.  If you haven't listened to that broadcast, I encourage you to do so. Since this podcast is about deafness, it is important that we start with that.  

Today though we will be exploring a different perspective.  As I have said before, the deaf community has all these people and professions that orbit them, and each of them have a different view of deafness.   The largest group that surrounds deaf individuals are hearing family members.  So today, we are going to start to explore that -  more specifically, with hearing parents.    I will warn you however that this episode is just as much for professionals in the field and deaf people as it is for hearing parents.   I am speaking to all of you, and there are things you need to understand.

Now before I start, I have to confess something. This episode is probably one of the hardest for me to record.  I have been thinking about what I wanted to say for months.  This discussion is a personal one for me, and to be frank rather emotional. In fact this whole podcast is emotional for me.  I don't just work in this field, I live it, and for every controversy and every struggle that relates to this topic, my heart is in the middle of it.  Friends and coworkers of mine will even tell you that even after all these years of doing this, I still get emotional when I talk about certain topics. Why, because they are hard moments in my life.  Things I had to overcome and learn, things I wish I could change and make better for my children.  So, today  I am going to get very real with you and talk about some of my personal experiences with my own family, some of which are hard to confess.  I will admit that I am a little  afraid of bearing my soul to you.  I am afraid  people will judge me, that you all not understand, and most of all that you won't be kind.    BUT. I told myself that I would be brave, and I promised you that we would talk about what others aren't willing to talk about, so I will leave my heart in your hands.  so, Let's get started.  

34 million children have hearing loss according to the world health organization and 9 out of 10 of those children are born to hearing parents -  which means there are millions of parents out there that are starting down a path that we never anticipated.  I am one of those parents.  and I have worked with hundreds of families over the last 7 years that are going through the exact same thing.

Too often we are a group that is just thrown into the fire.  We are fed massive amounts of information from doctors, specialists of every kind, and therapists.  Everyone gives us information, even some people that have no idea what they are talking about.  You know who it is.  You know , that relative that has decided that even though they have never been in this situation that you must be doing everything wrong – and they have a million words of advice for you.   Or that doctor thinks that since he has a specialty in hearing loss that you should just follow every little instruction and can't understand why it isn't working out the way it is supposed to.  I mean according to research this just, this just works so just do it.  but They forget we live in the real world and our babies are real people.    As parents we are expected to hit the ground running -  move forward, do everything “right” and be completely logical about everything.  As if somehow we are just supposed to magically remove our emotions when they are sitting there talking about our child.   Somehow, even though we have no training, no education and no warning we are expected to function like a pro and have it all together.  
Now some of us are better at “faking” it than others.  We seem to have it together.  We hit the ground running and we dive into the research and action mode to do everything. These parents are seen as the good ones.  Those parents are also the ones that tend to also be the closet criers. That sounds strange, I know.   They are ones that suddenly start having panic attacks or have random emotional outbursts that they try to hide.  Believe me, it happens more than you think.      But if we are all honest, as parents we are usually lost, confused and have a ton of emotions that we feel we can’t express at the beginning.  Emotions we feel guilty for feeling, and we wonder if we are a terrible parent because of it.  Maybe this isn’t you. Maybe you do have it together and maybe you are totally cool with everything that life has thrown at you.  If so, I applaud you.  You have achieved something very few have.  Over the years I have talked to countless families, and most of us, at the beginning of this journey certainly don’t have it together.  I certainly didn't.  And just so you know where I was at the beginning, I was the closet crier.  I would wait until everyone would fall asleep at night and I would let my emotions run.  Sometimes I would have panic attacks, sometimes I would cry.  Most times I would lay awake and worry.  But to the outside world I seem to be doing everything right.   

I will never forget the day that I found out my oldest had hearing loss.  It was completely unexpected and it was a defining moment in my life.  I won’t go into the details of the day, and I don't want to bore you, but I am willing to bet that every hearing parent out there remembers the day they found out too.    There are different reactions to all this.  Some say that we have stages of grief.  Some people describe it as the “welcome to Holland poem”.  Personally, I don’t relate to any of this.  For me, it was like someone shook my etch-a-sketch. I know it sounds weird, and some of you are probably young enough that you don't know what an etch-a-sketch is.  For those that don't know, an etch-a-sketch is a children's toy that you use knobs to draw pictures and then when you are done you shake it up and it erases.  Well, when I was pregnant with my first, I drew a picture in my imaginary etch-a sketch.  You see,  I had all these visions of what my child’s life would look like and how it would play out.  A movie montage in my head that had all these great highlights of family life that was to come.  And now, someone shook  the picture. and  It became all blurry.  Yes, the structure and basics were still there but the details were all fuzzy.  What was my child’s future going to look like?  What would he need?    Will he have friends?  What will his education look like?  I had So many questions.  
Now, To a Deaf person they may seem like stupid worries. Of course you can do all these things.  Of course you can live a normal life.  Of course you can have all these normal childhood memories.  But for me and for many other parents, we have no idea.  We don’t know very many deaf people.  We don’t know what this is going to look like.  Someone shook our etch – a sketch.  Now we have to redraw our vision and honestly we don't know where to begin.  

I have had a lot of time over the years to reflect on my emotions.  They have certainly changed over the years.    I still have a lot of questions but my attitude has changed.   
I am very close to my children.  Both my daughter and son have severe to profound hearing loss and so the world of deafness has become a central part of my life.  I have always tried to be open and honest with my children about my experiences and my feelings, in hopes that they will also express their feelings to me as well.  Perhaps that is wrong, but I feel like when I show my vulnerabilities to my children, they learn that they don’t need to be perfect either.  That we are all learning together and growing together.  That is ok to have mixed emotions about things.  

This has caused both my children to have some pretty hard and honest conversations with each other and with me.  A few weeks ago my daughter asked me if I was sad that she was Deaf. It was a day that there was some teenage girl drama at school that was just kind of amplified because of her misunderstanding of how hearing people operate.    And she asked me, Would I change it?  Well, After 15 years I can honestly say, no, I wouldn’t change it.  Her hearing loss, her deafness.  It is part of who she is, and if I change that I change her, and that would be terrible because I may be biased but I think she is pretty awesome. 
BUT, I did tell her the truth, that I was sad at the beginning. She of course immediately felt that I was sad because she wasn’t perfect.   But as I really thought about it I realized – no I never thought of my kids as “less then” perfect  and all my emotions stemmed from one place.  FEAR
-fear of the unknown
-fear my  child would be rejected/bullied
-fear that they would have a hard life
-fear that they wouldn’t be happy
-And the biggest fear of all – fear that  I wouldn’t be enough – that I would fail to give them everything that they need.  That I would fail to protect them.  That I wouldn’t be smart enough, I wouldn't be strong enough or capable enough to be the mom they deserved and needed.  All the insecurities I had as a mom tripled in size.  I barely knew how to be a mom, and now here I was a mom of a deaf child.  And I had no idea what I was doing.  

Over the years I have discovered that most parents of deaf/hard of hearing kids have big emotions and they all stem from fear.  Some deny it -  thinking that if they don’t acknowledge it that it will just go away or it isn’t real.  Some get angry and try to assign blame.  Some freeze and get sad and are unable to move forward.  Some even run away or give up. -  it is  all just based on fear.  Whatever our reactions  it is usually misinterpreted by our deaf children.  They sometimes can feel rejected or angry at us.  Maybe even try to deny their own hearing loss thinking they need to be ashamed because we must be.  But deep down our reaction is really our fear and has nothing to do with how much we love our children.  It is not about their inadequates,  is about ours  

As most things go, time tends to heal us and I have adapted.  I wish I could tell you that it was just hard at the beginning and I got over my fears and everything became easy, but I would be lying.   Yes, I have gotten better at being their mom. I have learned and adapted and become more confident.  But the truth is, raising a child with hearing loss is like riding a roller coaster.  You have ups and downs.  It can be fun and exciting and there are many moments you feel on top of the world, but inevitably there are moments that the floor goes out beneath you and you plummet. These are unexpected moments.  
It happens when I least expect it.  When everything seems to be ok and I think "I am totally rocking this mom thing, I got this and my kids are doing great.  And then life smacks me in the face.  

It happens when I find out that my child has lost even more hearing and I have to console them.  When they don't get invited to a friend's house because the parents are afraid they won't be able to communicate so they leave them out.  When my child has a deaf identity crisis and are yearning to fit in and I  have to blindly guide them through it- not knowing what to say or do. 

There are moments of pure anger and defensiveness when a coach tells my child they can't be on a team because they are deaf and I have to fight for their right to do so.  When a teacher refuses to accommodate their needs or even worse purposely embarrasses them.  When a doctor talks over them and doesn't even make eye contact or when a family member or friend ends up tossing them aside because it just isn't fun learning sign anymore and they don't want to try.  

It is hard to keep my head up. To have confidence in myself that I can teach them something I am trying to figure out on my own.  It is hard to shield my children from the dangers and ignorance of the world and I just have to hope and pray that they will be ok.  
But I persist in it all, both my children and I continue to stumble through it all.  And over the years as a family we have learned to remind each other that others don't define who they are and they certainly don't get to tell them what they can and can not do.  That things may be hard sometimes, that life and people can be unfair and cruel, but deafness is not an excuse to not succeed.  It is a challenge, one that showcases their strength.  It is not a weakness.  And when that happens, when my kids defy everyone's expectations of failure.  When they prove people wrong and show that deafness doesn't make them any less, then as a mom it is the sweetest victory there is.  That is the roller coaster high.  Seeing my child succeed.  Those moments bring me to tears, because I know what my child had to endure to get there and the nights of heartache and prayers that I have spent helping them.

Now I know that so far, I have painted a bleak picture, and I don't want you to leave you with that.  There are some great parts about having deaf children.   You can vacuum anytime you want, play loud music during nap time, watch movies with loud surround sound after bedtime and have private conversations with your spouse in the car even when your child is sitting in the back seat.  There is a lot of laughter and fun, moments of pure joy and for a good bit of the  time, our children lead very normal, crazy lives like every other kid.   

And let me be clear, having deaf children is by far the biggest blessing in my life.  Because even though I have had hard moments and my heart breaks sometimes, their deafness has had a profound positive impact in my life.    It has made me a better parent.  It has forced me to slow down and focus on what is important.  Their deafness has made me have empathy and understanding I never had before.  It has brought people into my life that are very special to me that I would have never met.    And most of all, it has taught me that now matter what, nothing is impossible -  and no matter what my circumstance are, as human beings we can succeed at anything.  My children inspire me every day.  Because of all those things I have a relationship with my children, and they have a relationship with each other that is uncommon in today's age.  After all this time, I realized that having children with hearing loss is my golden ticket to blessings beyond my imagination.  Every tough moment, and difficult conversation is worth it.  It is the ride of your life.  

So why am I confessing to you and baring my soul and all these emotions.  That I have been angry, sad, confused and scared -  and frankly sometimes I still am.  That I felt guilty for having these feelings because I have convinced myself that if I was a better parent, I wouldn’t feel like this.    Well, I tell you all this because  I want to mend some hearts today and hopefully maybe ease some of those fears.  

So, If you are a parent of a child with a hearing difference  - let me just tell you , you are not alone.  There are thousands of us out there -  millions even.  You are allowed to have these emotions.  You are not a bad person for having them.  Your feelings are actually quite normal.   But I encourage you to face these emotions, whatever they are.  Find someone to talk to about it.  Talk to your spouse, a therapist, or a friend or find another parent to talk to.  Work through those fears and emotions you have  and come to a place of acceptance.  Your child needs to know that you accept them for who they are.  That you love them.  That their deafness doesn’t make them “less then”.    Don’t let your fear stop you from having the life you always wanted with your child.  And remember you got this.  You CAN do this.  Your child will be ok.  If you are just starting this journey, I can tell you that 10 years from now, you will look back and think "why did i worry so much".  You will be able to turn around and lift other parents up and assure them that they will be ok.  You will be an old pro at this.  Just remember, you will get better at this.  It is all new and it is ok to not know what you are doing at first.  Keep working at it.  Keep trying and for god sakes, give yourself some grace.   You don't need to be perfect.  You just need to love them and do your best.  

 If you are a professional working with a hearing parent - be patient with us.  We are scared and confused at first and we need you to be gentle and go-slow with us.  We didn’t go to school for 4-8 years for this. WE don’t know all the acronyms and terms that you use without thinking.  We have no idea how to read an audiogram at first , what kind of hearing technology is out there.  We barely remember that 8th grade biology lesson on how the ear works.  so  Be patient with us.  Explain things to us. And give us home and confidence that it will all be ok.  If we don’t respond with doing all the right things, don't get angry with us.  we probably didn’t even process the information because we were overwhelmed.  And most of all, don’t give up on our children because of our reactions.  Remember why you chose this profession and keep it close to your heart as you are working with us. And if you find yourself getting jaded or continuously frustrated , take some time to explore that and ask yourself if working with deaf children is really your calling.  Because if you work with deaf children, you will most likely be working with a lot of hearing parents.  We are the pathway to our children, so get used to us.  

And last if you are a Deaf/hard of hearing person with hearing parents -  understand that you are enough.  You have always been enough.  That there is nothing “less then” about you.  That your parents reaction to your hearing difference may be based on fear. Your parents are human, with flaws, emotions, insecurities and more love for you than you can even imagine.  We are learning as we go and there is no playbook here.  We are doing all these things even with our fear and stepping out and trying to be brave and trying to do the right things.  We fear we can protect you from this cruel world and that you will see us as other as not enough for you.    So Give us grace in all this, forgive us our mistakes, and help us through this.

ok . so I know I talked about a lot of heavy topics today.  I promise other episodes of this podcast will have more fun moments, but I  feel like  it is important for us to get serious and talk about all the things others are too afraid to say.  It took me a long time to have the courage to start this podcast.  Throughout this, I will be asking a lot of questions but  I will also be bearing part of my soul with all of you.   Hopefully it is helpful.  Hopefully you will be gentle.  and  Hopefully it allows you to see the people around you differently.  I started all of this because we all need to be honest about the emotions and the things going on in the deaf community and seek to understand each other.  We need to have grace for ourselves and for others.  We need to work together to change the world to be a better place for our deaf community.  But like all things, the best place to start to make real change in the world is with ourselves.  So let's each do better to confront our fears.   Let’s do the hard work together, let's have those hard conversations and let's make this place better for all of us.  
So I'm going to  end there for today. If you like this podcast -  don’t forget to subscribe, like and share with your friends.   Stay tuned for future episodes where we will explore all sorts of different topics and hopefully bring all of us closer together to make big things happen. But for now I'm   signing off -  Til next time