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Mom Talk: When A Child’s Disability Leads To A Parent’s Expansion

Written by Alicia Johnson

Photography by Photos by Rachel Stanich

The beautiful faces in today’s Mom Talk might look familiar to MOTHER readers. The mother-child duo Alicia Johnson and her son Linden first appeared on these digital pages in an April 2021 essay titled “Raising A Son With Treacher Collins Syndrome.” That essay covered Linden’s birth, surprise diagnosis, and the early days and months of his life. Today, Alicia is back to share how her child’s disability has lead to growth she couldn’t have imagined, including learning a whole new (literal) language. As always, you can follow along with Alicia and Linden’s journey on Instagram.

Old Facebook posts remind me of “One Year Ago.” At the time that I started documenting Linden’s first days Earth side, I used social media as a coping tool to accept our NICU reality. Like, if I just put him out there, then his Treacher Collins Syndrome diagnosis, his tracheotomy, our entire experience would become so real that we couldn’t hide. I didn’t realize until one year later that my posts and pictures would help to fill gaps in memories I’d forgotten.

After Linden’s first birthday, back in May 2021, a flood of “firsts” started to appear on my timeline. Initially they were anniversaries that I expected to see come back around. For instance, Mother’s Day was the first time I met Linden (I definitely documented that), when he was a week old he received his lifesaving tracheotomy and g-tube (videos from this day still live in my Instagram Stories), a week after that was the first time we held him.

But this past week I was reminded that it’s been one year since we committed to learning sign language and a year since Lindo received his hearing aids!

One of my biggest questions when being discharged from an almost 60-day NICU stay with a medically complex child was, “What next?” He was coming home and now it was our responsibility to help him thrive. I often joke with my fellow NICU moms how easy we have it because our kids get sent home with manuals. That statement is only half true.

One of many resources that were provided to us after Linden’s official TCS and hearing loss diagnosis was Early Start, a California early intervention program for infants and toddlers with disabilities and their families. We were set up with a speech therapist, sign language specialist, and an occupational therapist all to be met with at one time, via Zoom. I took a snap shot of our first meeting, not knowing it would be a monumental moment for us.

When I committed to being not only Lindo’s mother but also a medical caretaker and teacher (what all parents are), that meant acknowledging Linden has disabilities and also confronting my own insecurities. Learning signing language (ASL) was one of the first tools recommended. We started off rocky, we’d never used sign language in our home, but I found a way, as I’ve done with Linden, to love it.

Every week for the past year I’ve committed to “going to school” for Linden. We don’t have nursing. I’m not employed. This is my job. Our teachers just so happen to all be mothers, so mornings when my hair isn’t combed, I’m still in pajamas, or I can’t make a Zoom because I’ve double booked with another provider, they get it. I feel so blessed because they are such a wealth of information and support all around. From the beginning, if I needed a certain type of pacifier because I’d tried them all and still wasn’t getting a latch and I was stressed, I’d receive an inbox of links with options I had no idea existed. We’ve gotten sensory toys delivered and activities to keep us busy. Linden is well taken cared of.

Another resource that I was able to take advantage of came in the form of an invite from the Care Parent Network to attend a monthly support group dedicated to Black mothers of children with disabilities and WOW! Let me tell you. I showed up to this Zoom after a trying day, an hour late! I’d almost forgotten it was happening, I wanted to hide, but they noticed I entered the “room” and after the moderator finished speaking, she kindly asked me to introduce myself. I’ve never publicly said this, but I have a stuttering speech impediment, which really shows up when I’m nervous. So this entire process of advocating for Linden means I have to use a voice that I’ve been TERRIFIED to use before. After telling my story, sobbing, releasing, I exceeded the time limit I’d read on the agenda and told these women feelings I haven’t even told my partner and THEY GOT IT. I’m stronger because of my time with them and I plan to attend again.

This summer I took some time to educate myself on the civil rights of Black deaf people and learned about Black American Sign Language, a dialect of ASL and how it was created during segregation when Blacks weren’t allowed to attend deaf schools. I met a young lady via TikTok who was 4th generation deaf and she introduced her grandmother and grandmother. I also learned a few BASL words, like “freedom” and “turn up” (not to be confused with turnip, as Linden’s teachers once hilariously assumed!).

All around, Linden’s presence continues to expand our family. We and those around us are all better people because of him. His surgeries were postponed until later this year and as we anticipate more uneasy times we just continue to bind closer as a family and as community.

Lastly but most importantly, it’s OK to be disabled, to say you are disabled, to have a disabled friend or family member. Folks with disabilities fight really hard to be seen and to have rights. Show respect.

Some days I feel more like Linden’s nurse than his mother, so I’m going to keep posting online for continued reminders of our good times together.

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