Mothertelling Story - Embracing My Son's Deafness
KKrispahlyn DariaJul 24, 2024 at 7:13 pm11min
S
00:06Speaker 1
Kris Daria is our next storyteller. She was the first person to sign up for the mother telling program. I hadn't even sent out the emails to the other people interested and she already signed up. Which was intimidating, actually, because she is somebody that I had looked up to and admired. And so I thought, how are we going to work together? I'm a little all over the place and she is so calm and collected and confident. But you know what? People who are a little bit different, become friends. So, without further ado, here's my friend Chris Daria, and her story, Mommy, I love you.
K
01:01Krispahlyn Daria
I have never met a person who was deaf. Until I met my son Jayden. We found out he was deaf when he was a year and a half. And at that point, he wasn't babbling any words and he wasn't reacting to any sounds around him. So it was right before Christmas of 2020 that we brought him to do a hearing test. And having the audiologist confirm in that moment that Jayden had a profound hearing loss was truly shocking to me. I remember the car ride home feeling so heartbroken. And I was stuck in Montreal traffic and my mind was going into overdrive thinking all sorts of questions overwhelmed with why was this happening to my son? What could I have done during my pregnancy to prevent this? Was it because I was working a stressful job? And I remember feeling angry at God for doing this to my son. Like out of all the kids. Why Jayden? Why him? I started to imagine all the things that he'll be losing out on in life like Will we ever get to sing songs together in the car? Will he How will he make other friends? And will I ever get the chance to hear Jayden say: "I love you Mommy"? I started to grieve this beautiful idea of a life I had in mind for my son, because I had no idea what it was like to be deaf. So I went straight into mommy fixer mode, searching the internet for answers, looking into parent Facebook groups reading everything I could to find someone to tell me what I should do next. How can I fix this for my son? I didn't know where life was going to take us from here. And so my first instinct was to ask his audiologist: "Will Jayden ever need to learn sign language?" And I was surprised at that appointment to be told No that he wouldn't need to learn it right away. And so our team put us down a dizzying path of hearing appointments, audiology appointments and hearing devices and speech therapy. And through this, I was given the hope that Jayden will eventually learn to hear and learn to talk but with lots and lots of hard work. And so six months after we received the diagnosis, Jayden got his cochlear implant surgery on his second birthday. And it's a device that has a magnet on his head that sends sound signals to his straight to his brain. It bypasses the ear and sends a sound signal straight to his brain. And it all happened very quickly because it was during the pandemic and we had to coordinate driving him trapped back and forth from Montreal to Quebec City where he needed to get the operation. And through this, I was just hanging on for hope that all of this will be worth it if he could just get his cochlear implant. So to help him hear. After the surgery, I was still driving Jayden three times a week to his audiology appointments and speech therapy sessions. And it was an hour away from our house. We were working continuously to improve the programming of implant to send more sound signals to his brain. And in those moments, I have to admit I felt much more like his taxi driver more than his mother. And I felt really guilty for complaining about that because I really thought we were doing everything we needed to do for Jayden to have a good life. And so I kept on hanging on for him to hear better.
K
04:52Krispahlyn Daria
At home, it was a struggle too. Jayden was having more mood swings and temper tantrums and I remember also that one night, Jayden was crying nonstop in bed, tears of pain. And I couldn't understand what was going on with him. We, we didn't have a way to communicate. And I saw, he wasn't able to express to us what was going on. Was it a bad dream was it a tummy ache, and in that moment, I doubted my own ability to be a good mother for my son because I couldn't take his pain away. I didn't know how to help him fix it. And I just felt so disconnected from him. There was nothing else I could do but hold him tightly until he fell asleep. That was when I decided to go back to my original instinct. In that moment, I saw how important it would be for Jayden to have access to a more visual language, one that uses his natural ability to see. And so his dad and I started taking American Sign Language classes A S L. And we started teaching him signs like, I'm hungry, I'm thirsty, I'm tired. This hurts. Time to sleep. Stop, please. And thank you. And after a few weeks, it was amazing to see Jayden signing these back to us. At two years old, we were finally able to know and see what Jayden needed in the moment, I was so happy to finally better understand him and connect with him in this way. And so I started to do more of my own research, I was finding more families who were adopting a bilingual approach with their deaf and hard of hearing kids who were signing and speaking with their children. I started meeting more amazing deaf people who use sign language as their primary mode of communication. And it just it was beautiful to see how they were living out full lives. They had community they went to university got jobs, had kids get married, raise families, despite all their hearing challenges and being exposed to these lived experiences and conversations planted started to plant a beautiful new vision in my mind for life that we could be building with Jayden. And all of them reassured me that there was nothing wrong with Jayden, which was a thought provoking idea for me at the time. But that's when I accepted finally that being deaf is part of who Jayden is, and he didn't need to be fixed.
K
07:59Krispahlyn Daria
Some doctors believe that learning sign language prevents deaf kids from learning how to talk. And so the most common professional recommendation is to put kids down a path of medical interventions and speech therapy after being diagnosed. And I saw how the medical system wasn't always exposing parents to the benefits of using sign language right away for their deaf kids, which I learned later puts them at risk for language deprivation. And in Montreal, where we were living at the time, there was a school for deaf and hard of hearing kids. And it was mainly focused on acquiring listening and oral skills. The teachers were not taught sign language or using sign language with the kids. Kids mainly were encouraged to adopt in mainstream school settings with the help of their hearing device. And at the time, that was well, that really works well with families with hearing parents. But I saw already that it wasn't going to be the best environment for Jayden to thrive in. And so last year, in the summer of 2023, our family decided to take a big leap of faith to leave our home and life in Montreal and move four hours away to Belleville in Ontario. Jayden is now five years old, and he started junior kindergarten at an amazing school for deaf children where the teachers sign with their kids. It has a big beautiful campus. The school is 150 years old, where generations of deaf people have gone to it's been their home. And it's like when I go visit the school I always imagine it being like this special X-Men school for kids with special abilities. And we love our newer town. I love that Jayden gets to be recognized by other parents And kids when we go to the park or when we go to the grocery store, I love that we get to meet up with families with play groups of deaf kids with parents who signed with their children and helps me practice my my ASL to. I love to see when Jayden comes home from school now he's signing poems and stories to me in ASL and he shows me how much fun he's having with his friends. And I also love that Jayden can now sign back to me, Mommy, Mommy, I love you. Now I truly believe that God appointed Jayden and I to each other. His soul chose to come into this body in this point in time to be my teacher. It's not my job to fix Jayden. My only job as his mother is to love him whole as a whole person and to help his soul thrive in this lifetime. And I'm so so happy that I trusted my inner knowing and follow the signs to guide us here. Thank you
00:0000:00