In all of my fears (and there were many), the possibility that my son Sawyer could be born deaf was never among them. My fears weighed more towards Autism, Down Syndrome, or a missing limb of some sort. Hearing, or the lack of, wasn’t even on our radar.
There was no doubt in my mind that my son could hear us in the womb. After all, his movements dramatically increased every time that I’d sing, when my husband chatted to him, and especially so every time we went to a movie theater. Imagine our shock and dismay when we were told our son has Profound Bilateral Sensorineural Hearing Loss in not one, but both of his ears. Simply put, he is completely deaf. Devastation rang strongly those first few days following. We shed a lot of tears, and grieved the relationship we had envisioned, that was no longer possible. We finally acknowledged, both intellectually and emotionally, that we couldn’t grieve forever – we had a newborn baby depending on us! – so we gave ourselves an additional 72 hours to scream and cry and think and pray – and then we trudged ahead into this new, unfamiliar world with the conviction of conquering it.
What does he need? How do we access that, and give it to him? What do we want for him? What is available to him? These were among the first questions my husband Chandler and I asked each other. Sawyer, to our knowledge, is the first member in all of our families to be born with a hearing impairment. The road ahead of us had not yet been forged by anyone we knew – there was no one whose experience we could learn from. The daunting task of blazing our own trail weighed heavily on our shoulders.
We called everyone, beginning with the phone numbers provided to us by the audiologist who diagnosed him, and then quickly branched out into over a dozen other organizations. Every individual and organization seemed to have their own beliefs and opinions, drastically different from the next. Our first lesson on deaf culture, for example, was the great divide between the hard of hearing, who choose to use technology, and those who believe that technology is an abomination. We found what little hope we had in finding help being ripped apart little by little by these organizations and their contradictory and often judgmental views. We had a 2-month-old child who couldn’t hear us, and everyone around us telling us we had to act NOW or he would be forever impaired by our inability to make an imperative choice.
We felt we were in no way educated enough to make a decision that would impact the rest of his life, on a topic we were totally unfamiliar with, and especially when one considered that some of our options were dependent upon our acting quickly! Yet WE were his parents, and it fell on US to make the “expert” decisions.
So, we made our first decision. We decided to start by flooding him with speech and language. As much as we possibly could.
Most professionals would tell you that if you have a deaf child you have to either go with Auditory Verbal Therapy, OR you progress with sign language. It’s one or the other to them, and if you even so much as blink at the opposite side, you’re dead to them. It’s a very harsh divide. Regardless, we decided to toe this line because we wanted it all!
I’ll never forget the first moment of true hope I experienced for Sawyer. November 10th of 2019 – it was my birthday. Chandler and I, several months before, had purchased tickets to see Wicked at our local theater. My thoughts were divided through the entire performance. Half of me really enjoyed experiencing this musical with my husband, and the other half of me was grieving what I thought I could never share with my son. Music is incredibly meaningful to me, and I want so much to share that with my children. The performance ends – as does the entertaining distraction – and my feelings of disappointment and devastation come back in full force. A moment later, I turn to exit the aisle and, about 30 feet away, I spot a teenage girl wearing cochlear implants with her mother. I grab my husband’s hand and make a beeline in their direction.
Just five minutes later, my heart had shifted 180 degrees. This young woman could hear and understand the show! Not only that, she plays the piano! She speaks very clearly, and she talked about how great the technology had been for her, personally… how thankful she is for it, and how she is not limited at all, in any capacity. I, for the first time since his diagnosis, saw my son living a full life, like any other child. I could finally see that he would be able to experience and enjoy my world, and I would be able to experience and enjoy his.
The hope she and her mom gave us that night refreshed us, and we were able to move forward with clear eyes and a lighter heart. To you two, we will always be thankful. God sent you at the exact moment we needed you most.
Sawyer received his hearing aids a couple of weeks later right before he turned 3 months old, the day before Thanksgiving of 2019. We had no expectations. We had been thoroughly prepared for the possibility that he may not react to sound stimulation. Moment of truth: the hearing aid is fitted on him, we turn it on, and he cries the most beautiful, soul wrenching cry that I’d ever heard – the one that I now recognize as over-stimulation. Our deaf son hears. What he hears for now is not clear, and the range is very limited, but he can experience the gift of sound.
We had conquered one overwhelming hurdle. Our next focus would be speech and language, with a plan to achieve total communication. We decided we were going to be ambitious and tackle Auditory Verbal Therapy AND Sign Language. Our goal was to flood Sawyer with everything that we possibly could so that he could hopefully learn to communicate clearly and not fall behind in his language development.
It turns out our son is very intelligent – more so than we were prepared for. Both my husband and I humbly take full credit for that! He’s an observer and observe he did! He watched us for 3 months. He watched us as we began his auditory verbal therapy, sandwiching his daily auditory activities with sign language. He witnessed us adapting to our changing routines amidst the COVID-19 pandemic, struggling to balance work, therapy, sign language lessons, his medical appointments, our health, our marriage, and more – and despite all the stressors, he developed the sweetest personality! He began to communicate and connect with us. Despite our efforts with sign language, his preference was strictly auditory. He lost interest in signing. It was as if he were saying “if you want to talk to me, you will need to TALK to me.” So we revised our plan, and have adapted and progressed according to HIS cues, not the cues and demands of the deaf culture.
I’ve learned that being a good parent means listening to your child. Yes, I realize that my now 11-month-old son is not smart enough to tell me what he wants for his life, but he IS smart enough to communicate and express some of his likes and dislikes. For example, he stops everything to listen when Mommy’s music box plays “You Are My Sunshine”. Daddy’s silly sounds make him laugh. He loves the sound of tickles incoming, as well as hearing the words “milk” and “bath time”. The Itsy-Bitsy-Spider is his all time favorite nursery rhyme. When he hears his name, he turns to look. And as soon as those hearing aids are turned on, he lights up and smiles, every time. Could some of this be achieved in sign? Yes. But he doesn’t look. He doesn’t engage. For him, at this moment, it’s sound or nothing. This is HIS choice, not the choice of anyone outside of “we” or “us”.
There have been several individuals throughout our journey who have messaged me to say we should not proceed with Sawyer’s cochlear implant surgery. They say that it is cruel, and that if I want to be a good parent we need to accept that our son is deaf, stick to sign language, and accept him as he is. We are told that our choice not to do so, will set the message for the rest of his life that he is not good enough the way that he was born.
I’m here to tell you that that is not true. My son, as he was born, is perfect. Ideal? No. Perfect? Absolutely. My honor, as his mother, is to give him EVERYTHING. That includes access to technology that will give him the best chance to comprehend and develop spoken language. When he is older, he can choose for himself whether or not to keep that access, and I will make it clear that we love him no matter what. It will be clear that we will respect and support his choices, regardless.
So here we are. Sawyer is 11 months old, nearly one month away from his surgery for cochlear implants with Advanced Bionics. We have weathered the great deaf-culture divide and finally gained some knowledge that we hope to share with those who may just be beginning their own journey. We have blazed a trail. We have forged our own path. And we welcome you to journey with us.
The decisions you make in the first six months of your child’s hearing journey are imperative, and incredibly difficult. People are going to rush you, and treat you as though they are on the cutting edge of all knowledge so you would be unwise not to heed their advice – and they probably won’t show much empathy or patience. Heck, we angered one auditory verbal therapist because we refused to forego Sign Language until we felt as though we were more educated on the subject and the direction our journey might lead us. She literally told us how we were making a terrible decision that would forever ruin our son, and that she would not work with us if we continued to sign with him.
On the other side, the sign language community often negated our choices to seek further development with the spoken language. Too often, we felt our choices were disrespected. People we thought we trusted, praised our choice for total communication, and still often disrespected the other members of our team. Many in the total deaf community accused us of abusing our son, and not loving him enough to accept him as he is. Some even threatened us, saying they would call Child Protective Services on us for “mutilating” our child. While they are right to say there is nothing wrong with him (we can agree on that), they tend to go further than they should by openly insulting us, and threatening us for the decisions we have made.
No matter how hard we tried to do what was right – for OUR son and family, it seemed we were always wrong. But your choices aren’t wrong if you’re making them for the best interest of your child.
That’s what your first 6 months will be about… educating yourself, trial and error, making tough decisions that will have lifelong lasting affects – and all while being bull-rushed, disrespected, constantly scrutinized by your peers and evaluated under a microscope by state programs and private organizations. None of that takes into consideration what you might also be dealing with in your personal life, such as medical testing to which your child might have to submit. It is an emotional journey. It has been very challenging. I’ve weathered some of the hardest paths I have ever ventured.
The hardest lesson I’ve learned is that it is okay to disagree with the professionals. While their advice is incredibly helpful and worth strong consideration, no one knows your child or family better than you. What works for one, may not work for another. If I had done what I was told to do, and had not ventured what I thought was best for us… I guarantee this journey would have been much harder, and my son would NOT have been better for it.
I’m so grateful for all the professionals we regularly work with for his care. Their respect and support for our choices has made more of a difference than I could ever express.
Now, my son babbles! He is so vocal, so expressive, and so eager for sound in his life. He says “mama”, “ga”, “buh-buh”. He loves to listen to his own strawberries and his own voice! We did not expect our son to develop any language, or to learn how to communicate. We did not anticipate his ability to hear and enjoy music. But I’m here to tell you that our choices and our efforts were more than enough. Our reward was greater than expected. Our resolve was tested and found strong. Our son is happy, and that is because of the decisions we made, those based off of his cues and personality.
Yes, you need to act quickly. You need to do something. Anything. Do not sit there thinking that your child will just magically meet their development milestones, or even cry about how they won’t. Hearing loss is not an end all. It is a journey, and it requires action, resolve, and for you to be an advocate. It is okay to disagree with the professionals. I encourage you to listen to their advice, but dare to decide what is best for YOUR child. It is okay to make unpopular decisions. You, and you alone, know the whole truth about your little one. So you, and you alone, are the only one qualified to make those decisions. Don’t let anyone treat you otherwise. Show your child he or she is worth fighting for – and then teach them to fight.