The Experience We All Deserve

The Experience We All Deserve

Photography by Molly Haley, mollyhaley.com

Milo’s hand grasped my index finger as a woman tapped the bottom of his infant feet. Another waved a laser pointer on the ceiling, and I watched as Milo’s eyes followed the red dot back and forth. “Good,” she said, and checked a box on a form.  

 It was February 25th, 2020 and I was sitting on my living room floor, with my two-month-old son wiggling on his back. The house was full of strangers. They grinned at him, and he grinned back. I was new to all of this and felt totally exposed. The months had gone by in a flash. My body was still soft from pregnancy and sore from childbirth. I hadn’t slept for more than two hours at a time for eight weeks. My eyes carried an entirely new heaviness.  

 One of the women pulled a large hand bell from her bag and the room went quiet. Ten days earlier, an Auditory Brainstem Response (ABR) test had told us our son was deaf. And now our house was full of people conducting laser and foot-tapping tests. Milo’s initial ABR results were sent to our pediatrician, who then contacted Child Development Services (CDS), and within days, my husband and I were setting up in-home evaluations to officially confirm Milo’s eligibility for state-funded services. The hand bell was irrelevant, we all knew, but it was a box the CDS team needed to check – you know, just in case the ABR test was wrong (it almost never is).  

 The woman with the bell clanged it loudly behind Milo’s head. No response. His head didn’t move and his eyes flitted back and forth to our faces as usual, not toward the sound of the bell. She did this a few times – piercingly loud at first, and then with a softer clang. “Nothing,” she mouthed.  

 I kept my gaze on my son, still grappling with the reality that not only did I grow and give birth to a human with my own body, but that I was now a mother of a baby who is also deaf. He hadn’t heard anything I had said to him so far – not the I love yous, or the silly nicknames we gave him, none of it. Our son was the first profoundly deaf person either my husband or I had ever met. As a hearing mother of a deaf child, I began my journey learning about Deaf culture, community, and communication knowing just four words in American Sign Language (ASL): “more,” “finished,” “light,” and “beautiful.” 

 As I sat on the floor, the wool carpet itching my thighs through my maternity leggings, contemplating how I would communicate and share a full language with my son, I felt utterly daunted. I didn’t even know the sign for mother.

 The first indication that our son was perfectly healthy was when he screamed as I pushed him (with the force of one thousand gladiators) out of my body. No one needed to tell me he was ok – I already knew. He was heavy, pink, and started nursing soon after we sang him a teary version of “For Baby, For Bobby” by John Denver.  

Milo passed all but one of the hospital newborn screening tests with flying colors. The nurses assured us he didn’t pass the hearing one, state-mandated since 1999, because he “probably just had fluid in hid ears” from the 24-hour labor – a too-common and often misleading tale among hearing parents with deaf children. I didn’t think much of it. Fluid in his ears was the least of my worries. I was more concerned that he was getting enough breastmilk (he wasn’t) and that he would have his first poop before we left the hospital (he did).  

The thought of my son being deaf did not occur to me until seven weeks later, when the audiologist said the words out loud. By that time, I felt I had mastered at least a few parenting milestones: newborn diaper changes; knowing when my baby needed to nurse and for how long; and I had even found the time to go on a walk by myself (around the block, that is). When, after three hours of testing, the audiologist told us that our baby is deaf, it felt like someone had placed me back at the base of a very tall mountain I had spent nearly two months already climbing. Exhausted, overwhelmed, and scared, I remember thinking: I can’t do this. In shock, but still holding Milo in my arms, I had turned to leave the audiologist’s sound-proof testing room and then stood in the doorway, looking left, looking right. I couldn’t remember which way to turn.  

On March 9, 2020, we met Amy, our assigned Early Intervention Specialist from the Maine Educational Center for the Deaf and Hard of Hearing (MECDHH), an organization that is contracted through CDS. It would be the only time we met her in person; a few days later, the whole world shut down. We moved our weekly meetings to Zoom and for the next fifteen months, Amy, along with our Deaf Family Mentor, Melinda, watched Milo grow through the narrow window of a computer camera.  

The Zoom meetings were challenging. I would be breastfeeding or bouncing a crying Milo while my husband would be trying to listen, take notes, and give an accurate report on how things were going. With Melinda, a Deaf adult in her sixties who was also a mother and grandmother, we began learning how to sign things like diaper change, good morning, time for a walk, playtime, and various children’s books and songs. When Milo began eating solids, we learned how to sign all the foods he was eating. 

We learned as much as we could, as fast as we were able to, while both working from home and, like everyone else, cut off from any family member or friend who could come over to help. I learned the sign for “mama” and signed it as often as possible (“mama is here!”; “mama is drinking coffee!”; “mama has the milk!”) in hopes Milo would sign “mama” before he signed “dada” (my strategy didn’t work; “dada” was first).  

As weeks turned to months, our meetings with Amy and Melinda weren’t only about raising a deaf child. Sometimes the meetings were simply about raising a child. We might spend the majority of the hour talking about a developmental shift, or a sleeping challenge, or even celebrating Milo’s affinity for pooping in the bath which, like sleeping challenges, went on for months.  

My initial annoyance at having these two weekly hour-long meetings (along with all of the hours of research and studying I was doing on the side) shifted to a feeling of relief and even excitement. As I moved through the long days of parenting a baby during pandemic quarantine, I would bookmark things that I wanted to flag or discuss with Amy and Melinda. I was a new mom in total isolation from the world, but I began to realize that what I actually had was more support than nearly all of the other parents in my community. Because my son was eligible for services, I had what many parents have in other countries: government-funded parenting support services. In talking with other mothers who were parenting babies and young children almost completely solo month after month, I realized I was actually one of the lucky ones.  

It’s no big secret that the U.S. spends less on families and children than any other advanced country in the world. For annual childcare, as just one example, the U.S contributes roughly $500 a year per family through tax breaks; the world’s other wealthiest countries contribute an average of $14,000. 

Perhaps the starkest difference is what is (or isn’t) available to a family as soon as a birthing person becomes pregnant. Most of the world’s wealthiest countries provide fully (or majority) paid parental leave. However, many of these countries aren’t just providing paid leave and government subsidies for childcare. These same countries are often providing in-home help from experts: In the U.K., a midwife visits a birthing person’s home every day for 10 days after they and baby return from the hospital, helping with common challenges as basic as feeding, diapering, and sleep. In Germany, parents can choose what’s called a Hebamme, or nurse-midwife, even before the baby is born to help the family prepare and eventually get acquainted with the new routine of caring for a child.  

There are countless other examples of how governments and cultures around the world prioritize new parents and babies. What they all have in common is consistent, in-home, fully-funded support that allows new parents to be held, seen, and supported by a wise and experienced community. The kind of experience I received thanks to Milo. The kind of experience we all deserve. 

Milo is now two. He uses two languages to communicate: American Sign Language and, with the aid of his Cochlear Implants, spoken English. In terms of language expression and receptivity, he has already surpassed what would be expected of a hearing peer of the same age (with both ASL and spoken English). My family will have state-funded Early Intervention services until Milo turns three, at which point he is eligible to attend state-funded preschool with other deaf and hard of hearing peers.  

Just the other day, Milo was being uncharacteristically shy as we entered a room with other deaf and hard of hearing families at a playgroup we’ve attended a dozen times. He was clinging to me and insisted we read a book together in a secluded corner. I caught Melinda’s attention and signed to her that he wasn’t quite ready to play. She nodded with understanding and finger spelled “S-E-C-U-R-E” to me. It took me a minute to understand but I eventually got it. She was just telling me that Milo needed to feel secure before he could join the other children. I sat with him for a few more minutes, holding him close and reading a book about dinosaurs. Before long, he leapt off my lap and without looking back, ran toward the line of kids at the slide. I walked over to the other parents I’ve been getting to know. They all have their own stories and battle wounds from these last couple of years. We don’t always have much to say but it’s clear we’re all relieved to see our kids laughing and playing. It’s everything for us to all just be together in one place, feeling seen and, most of all, supported.

Author profile
CJ
Claire Jeffers

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