Going with the Flow: Supporting Henry’s Language Journey

Authors: Elizabeth Ferry, Parent

Keywords: family, perspective, CHARGE syndrome, communication access, American Sign Language, Family Engagement Priorities 1-3, language, determination, advocacy

When our son Henry was born with CHARGE Syndrome, we quickly discovered that learning language was not going to be as straightforward as we had imagined. Very early on, we began hearing conflicting opinions about whether he would communicate at all, and we struggled to even get an accurate idea of his available vision and hearing.  Also in the early years, medical complications took priority. After all, we had to master breathing before we could even think about language!  

A couple of things happened in the first few months of Henry’s life that set us on a path, although we didn’t know it at the time. We were fortunate enough to connect with the CHARGE Syndrome Foundation, which allowed us to meet another family whose child had CHARGE Syndrome, and they became our close friends. I’ll never forget the mom standing over Henry’s crib in the hospital, her own daughter recovering from surgery two floors above us and urging me to start learning sign language.  

I think at the beginning, amid all that chaos, I latched onto that idea because it was something I could do for my son. We went home that weekend and told our Early Childhood Intervention case manager that we wanted to learn sign. We got baby sign books, and without knowing Henry’s visual field, started signing “milk” into his palm when we fed him. He was four months old at the time, and it was not long before we could calm his fussing by signing “milk” to him. He KNEW we were communicating. By six months old, he signed “milk” himself—and that was when we really knew we were onto something! We decided then that we would give Henry whatever he needed to communicate—whether that was American Sign Language (ASL), English, a mix of the two, alphabet spaghetti o’s—if that’s what he wanted, that’s what we would try.

Henry, age 1, seated in a small chair at home, signs “Mom” while looking around.

Henry, age 2, seated in a high chair in the kitchen, smiles and signs “Dad.”

Henry, age 3 signs “No” at a doctor’s office.

It was rocky at first. There were limited ASL resources available locally, and the Auditory/Oral model for educating deaf or hard of hearing (DHH) children was the prevailing method used in our area. We couldn’t see how it would make sense to cut Henry off from any option—in our mind, the thing he needed most was access to more options! So, we learned what we could at home with video courses and online programs. We talked to Henry constantly, whether he heard us or not, but we signed to him too. We sought out Deaf adults in our community and learned from them about Deaf/Hard of Hearing culture and identity, and about embracing someone as they are.  Eventually, we needed more access to ASL than was available in our small Florida town. We packed up our family and moved to Austin, enrolling Henry in the Texas School for the Deaf (TSD). When we got here, Henry had a list of 30 signs and 10 words. 

But another important thing happened once we got to Texas: our desire to give Henry ASL was met with encouragement, support, and resources. My husband and I took turns going to a free ASL class in the evening after work. We learned along with Henry, trying to keep up with his growing vocabulary. Henry thrived at TSD with people who could communicate with him easily.  

Then, a funny thing happened. Henry found a hearing aid that worked for him and started wearing it all the time. And he started voicing the words while he was signing them! By the end of pre-K, Henry was talking more than he was signing—even while at the Deaf school! He started to show us that he preferred talking to signing, and he was starting to read too. This came as a surprise to us after fighting so hard to get him into an ASL environment. We had to remember that it was not necessarily sign that we were fighting for. It was language, in whatever mode he chose. Remembering our pledge, we made the difficult decision to remove Henry from TSD and placed him in our local elementary school to try an English-speaking environment.

Henry, age 7, poses for the camera in his 2nd grade classroom, seated in front of his 1st place winning science fair project, “Carnival of Sound.”

Henry, age 7 grins happily while posing on an elephant statue in front of Cincinnati Children’s Hospital.

Henry will always have many challenges, but communication has become his greatest strength. I think the early success in sign protected us from any concern that ASL would delay Henry’s speech. Now reflecting back, I think his early access to sign language is the reason he developed a drive to communicate.  

Further, I think our promise to meet him where he was and follow his leads and needs encouraged him and gave him confidence. I think that signing the alphabet was the supplement Henry needed to understand phonics and learn to read. Signing the lyrics to songs ignited his love for music. And when he was first learning to talk, adding signs gave Henry the means to be understood. 

These days, Henry is in 3rd grade with an intervener. He reads at an 8th-grade level and he has deep, meaningful conversations with me all the time. And another funny thing has happened—he has now asked to learn sign again, so that he can be bilingual and communicate with his CHARGE friends! 

We never know where Henry’s journey will take us next, but following his lead has always felt like the right thing to do for him. I am so proud of my son for advocating for himself, for telling us what he wants with determination, and for not giving up. My family will continue to learn ASL so that it can always be available to Henry if he ever wants or needs it.

Henry, age 8, with mom on a ferris wheel, waves to the camera.

Henry, age 8 in front of his house during ‘golden hour’, looks proudly into the with his trademark crooked smile.