Photo by: MarkyBon

As a Parent Educator, I often teach parents that just as a child goes through different ages and stages, parents will go through stages as well. Most parents start out in the usual way, as Dreamers and Planners, sharing hopes and dreams with each other and their families and friends of what their child might be like. They wonder about how their child will look, whose temperament or personality traits he or she will have, things they want to do with and tell and teach their child some day, and how they hope to raise their family. They envision connecting and sharing the world with their child, and passing on family heritage, culture and traditions.

As their child develops, parents will go through more stages, such as Nurturers and Caregivers, Rule and Limit Setters, and Teachers of Life and Social Skills — all the while hoping and believing that they know what is best for their child. There will come a day in their child’s development when the child himself will challenge this belief, thinking that he knows what is best for himself. This is when parents begin to enter the stage of Learning to Share Power with their children, who are actually no longer children, but now teens and young adults. It does not mean parents surrender their power completely. Nor does it mean they stop believing that they know what is best for their child, but they begin to learn the delicate dance of negotiation and give-and-take. It is an intense time of practicing trust and it becomes and art on both sides to learn.

Photo by: Mr+G

When hearing parents discover their child is deaf, are these normal stages of parenting altered? What is their experience? Most likely it begins with grief, just like we are seeing from the actors and actresses who play the parents of a newly deafened toddler on the soap opera, All My Children. They experience shock, denial, blame and anger. Confusion and depression follows as they try to wade their way through the myriad of professional and personal opinions about ‘what is best for their child‘ — something that most parents believe is their sole, intuitive prerogative to decide as parents.

As a parent myself, I can certainly understand why any parent would fight to hang onto their decision making role in the lives of their children. How angry and frightened hearing parents of newly identified deaf children must feel when they are challenged to relinquish their hopes and dreams for their child, or surrender their decision making status to the powers that be.

I’m a deaf mom of a hearing child and I reserve the right, along with my hearing husband, to decide what is best for our son. However, I also know that it is important for me as a parent to listen to and value the subtle and overt clues, cues and opinions of my son, at every age and stage, because I believe that he, as young as infancy, has always had an inner knowing of what is best for himself on some level. The trick is to be in sync with my child and pay attention to those subtle ways he communicates throughout his young life about what feels right and what doesn’t, and then to balance this with my own parental wisdom of what I believe is best. It is my role and responsibility as a parent to guide the way and to set limits for my child, while at the same time, offering him choices within those limits so that he maintains a sense of self-understanding and personal empowerment.

Grieving Parents, and the physicians who guide them, are not unlike those portrayed on the soap opera. As melodramatic as daytime TV can be, the experience being portrayed is not far off from reality. Hearing parents believe that having a deaf child is one of the most tragic experiences they could know, and one, they would agree, requires immediate intervention. There are not many people who would disagree with the concept of “early intervention” of any kind. But the kind of intervention chosen, as we know, varies greatly, as does the information these parents have access to.

In my own experience of becoming deaf at age 17, I can look back and recall how quickly my own mother, who was a nurse herself at the time, got me connected to ENT’s and audiologists so I could be fitted with hearing aids and resume my “hearing” status as much as possible. Not unlike the soap opera mom, my mother went as far as to look for “specialists,” such as those at The House Clinic in LA, to see if there was anything more that could be done to restore my hearing. (This was also prompted by my own fear, so she was listening to me as well as her own parental intuition.)

I imagine, though, that even if my parents and I had received immediate, positive and helpful information about alternative modes of communication such as the family and myself learning American Sign Language to keep in full communication with one another, that my parents might have still exhausted their efforts and means to make sure nothing else could’ve been done to restore my hearing first. After all, learning a whole new language would be requiring the entire family to change, rather than just the deaf child. I imagine my step-father might have huffed at this suggestion, using his aging, gnarled fingers, his exhaustion or fatigue, or a sudden failing memory as an excuse not to learn ASL. My siblings might have balked at this requirement, claiming that it was me who was deaf, not them! Why should they have to learn how to sign?! This was my journey, not theirs. But this is where they would have been wrong.

I believe that the moment a child is discovered to be deaf, whether it be at birth or later in life, that child, his parents, siblings, relatives and community, also embark on a journey too — the communal journey into “deafhood.”

The moment a child is discovered to be deaf, that child begins a unique journey beginning to understand and make sense of what it means to be “deaf.” Being deaf will be a significant part of that child’s identity, whether he or she learns and uses sign language, cued speech, wears hearing aids, or is implanted with a CI. Being deaf will be a part of who he or she is. The experience may be positive or negative, depending on how that journey is perceived and criss-crosses with everyone else in their lives. It’s an awakening when hearing parents, family and community members of deaf children realize that the child’s journey into deafhood is one they too will embark on as they all begin to understand what it means to live with, guide, teach, care for and communicate with a person who is deaf.

I was not a baby, but rather, a young adult when I became deaf, at the edge of launching out on my own. The decision making power about ‘what was best for me’ was naturally shifting from my parents, to myself at that stage. I know that my parents wanted to encourage my independence at that point in my life, to gradually pull up the anchor and set me asail.

Photo by: J.A.L.E.X.

But this parenting stage was interrupted when suddenly, we found that neither one of us really knew what direction I should go or what was really best for me at that point. Our confidence was shaken. We were kind of flailing about in this new boat together, all of us, including the medical professionals, struggling to maintain a hold on the rudder. Asking me what I felt was best for myself was still pointless then. As a newly deafened individual, I was like a new deaf baby. I had no clue! My parents and I, like parents of new deaf babies, kind of had to figure this out together as we went along. I’m glad they were there for me, even if none of us knew quite what we were doing.

I knew long before my mother or the medical professionals confirmed it that my hearing loss was permanent. It was both a physiological and inner knowing. While my mother and I continued to look for the restoration of my hearing that first year after I lost my hearing, deep down I knew the undeniable truth. I was permanently and profoundly deaf and there was no going back. It was with this intuitive knowledge that my personal experience and understanding of being “deaf” began to evolve.

After a year of experimenting with amplification, lip-reading, more medical interventions and praying for a miracle that did not come, I knew for certain that I no longer wanted to be someone who was “broken” and in need of being “fixed.” I didn’t like the ugly hearing aids that now filled and hurt my ears. My head felt abnormally “full” all the time, as if I had a cold. My ears sweat profusely, the aids squealed every time I laughed, cringed or received a hug, and the ear molds would get full of wax and stink. All of this was supposed to make me feel “normal.” But this was nowhere near “normal!”

Nor did I want a surgical implant or magnetic devices under the skin in my skull. I did not want gawdy wires hanging from my hair or protruding from a box strapped to my chest or hidden in my pocket. This picture and perspective of being “amplified” to appear “normal” was more disabling to me than the hearing loss itself. I began to sense what I really wanted and knew what was in fact, best for me.

I wanted to be accepted for who I was. I wanted people to see ME and not just my broken ears or my hearing aids. I didn’t want to be perceived as disabled, and the images above were VERY disabling to me! I wanted to feel normal, free of all those wires, and devices. Yet, I still desperately wanted to communicate and stay 100% connected to my world.

Photo by: Choconancy1

To me, being a “deaf person” began to translate into perceiving myself as “normal and whole,” rather than “hearing impaired” which translated into a “broken hearing person.” Realizing this, I began to put my energy, time and focus into how to get by in life now as a normal deaf person. I did this by becoming connected with sign language. This is when my world began to change. As a result of having a new mode of communication (ASL) that kept me 100% in-the-know through interpreters and connected to other signing individuals, I felt 100 times more empowered, more normal, and less broken!

More significantly, as I shared this personal awareness with my mother, she too, began to shift perspectives. Whether it was through personal guilt or personal growth, she began to consider there might be advantages in learning sign language to once again communicate clearly with me. While I was at Gallaudet, she wrote to tell me she had signed up for her first ASL class at the local community college and took it for one semester. When I returned home, she was eager to practice her basic signs with me. What I remember the most, however, is how much she apologized for not learning it earlier on. This is when I knew my mother had also embarked on the communal journey into deafhood.

I wonder if other parents go through these guilt feelings after their children go on to learn how to sign years later and come to a deeper understanding and acceptance of themselves as “whole” deaf individuals. All the time, when medical or other professionals were telling them to focus on amplifying the child’s residual hearing as the only or sole method of communication, they were missing out on an additional alternative and very accessible mode of communication that would have supported their child’s language development, enhanced their self-esteem, and kept their child fully informed and connected to the world around him, through ASL. In all likelihood, over time, hearing parents of deaf children come to a deeper understanding about what it means or has meant for their child to identify themselves as “deaf.”

Had I remained living in my family home, I’m sure my mother would have continued learning ASL to communicate better with me. But, by then, I was grown and starting life on my own away from home, so her ASL learning and practice was cut short. Understanding what it means to be deaf, does not however guarantee that family members will change.

What was precious about this story of my own mom is that she began to see that she too was on a journey as a parent of a deaf child. My journey into deafhood was also shaped by the familial and communal journey of all the people in my own personal world as they perceived and experienced my deafness.

Having a deaf child requires that a parent and siblings change in certain ways in order to grow along with that child. Some do change, yet many do not budge from their set ways. Some parents and family members may feel it is easier to try to “fix” the child, and make the child fit into their hearing world as much as possible, rather than to join the child on that amazing journey toward wholeness, which includes comfortably identifying themselves as “whole” and “deaf” rather than identifying with a label like “hearing impaired,” which means “broken” and “disabled.”

Photo by: t_a_i_s

Parent Educators like myself, will often tell new parents of toddlers not to spank their naturally curious child when they get into things. Rather than disciplining or trying to change the child’s natural and normal development, we advocate that parents change the environment instead. Put treasured objects out of reach; Remove glass, sharp or heavy nic-nacs; Move things out of the way; Block areas of danger, and so on. The point is to allow the child to be who he naturally is, to follow his normal, curious nature, and to help him safely explore the world around them. The parent who takes responsibility for making the environment one in which the child can be his normal self, will see different results than parents who choose to punish, spank, hurt, add barriers or keep their child cooped up and removed from the world. We, parent educators, teach parents to understand their child’s normal development and to help their child discover, accept and love himself as a whole and valued little person.

Can you see the parallels and meaning here for hearing parents as they make choices for their deaf children? Will they be the kind of parent who tries to change the child, or will they seek to change the environment, becoming a part of that change as well, perhaps by learning sign language in addition to other interventions?

The final stage in parenthood is that of Looking Back. As the child begins to leave home, parents begin to look back at how they have done as parents. They may be dealing with boomerang children who go and come and go again for a few years before they are finally launched out on their own. But once they are successfully launched, parents will question each other or themselves and ask:

“Did I do everything I could have? Is there anything I would’ve done differently? How did I do as parent? Did I do my best? Am I proud of how I raised my child? Do I have any regrets? Am I proud of who my child has become?”

When parents can look back with pride at how they raised their children and at how they grew themselves as parents and individuals, they reach a contentment and satisfaction about their parenting experience and can achieve a sense of closure and actualization. If they are ridden with regrets, they do not reach this state as parents. As a result, they may wrestle with their own demons or inadequacy for years on end.

Photo by: lenish

Parents who are willing to enter the world of their deaf child, and become part of the environment that changes and adjusts with the whole child, are examples of a heroic parents who realize their “deaf” child is much more than just a pair of broken or amplified ears. The journey of a thousand miles begins with one small step. That step just might be learning ASL.

Posted by LaRonda on Wednesday, August 15th, 2007 at 6:44 am.