How did we find out about Shrey’s deafness?
I had a very straightforward pregnancy and a quick delivery. Shrey was born absolutely healthy and we were home a day later. He failed the newborn screen but we did not think much about it. Later he failed a follow up appointment, which got us concerned. It was finally confirmed through an ABR test almost at 2 months of his age that he is severely to profoundly deaf.
What causes his hearing loss?
We learnt that Shrey’s hearing loss is genetic. Both my husband and I are recessive gene carriers for connexin 26. So there was a 1 in 4 chance of our kid to have this kind of non-syndromic hearing loss.
How did we do after finding out about our son being deaf?
As a hearing parent who had none to minimal interaction with deaf people in my life, I really did not know what to think or where to begin. How in the world did this happen to me and my son? Why me/us? It was the most bizarre and unexpected event. I wondered how he would fit into our lives. How will he ever play with other kids or interact with his cousins? How will this affect the life of our other hearing kid who then was barely 2. In those early days, I wished this was all a bad dream that I could just wake up from. What would I do with this deaf baby and would my life ever be ‘normal’ again. People closest to me were not equipped to be able to help me. From therapists to friends, a lot of it ended in disappointment.
What were the next steps?
We were desperate for answers. Unfortunately a lot of it was a waiting game for a series of appointments and tests. In the first month or so we didn’t even have a timeline of the appointments and what each one was meant for. Once the audiologists confirmed severe to profound hearing loss they told us about the options of using sign language and determining the candidacy for cochlear implants. They told us about the deaf school in our area. We were told that there will be an MRI and CT scan to determine the candidacy for cochlear implants. Shrey was fitted with hearing aids at around 3 months of age. Although we hardly ever saw a discernible difference from using hearing aids.
I reached out to the deaf school and the first resource they provided was the infant caregiver class for parents that they were offering at that time. As I was on maternity leave, I decided to attend the weekly class. The focus changed from medical intervention to learning and development of a quickly forming brain of a newborn baby. I learnt about the importance of language in the 1 year of a baby’s life and 80% of brain development within the first 3 years of a baby’s life. We were actually racing against time here. It was clear to us that we needed to start signing to the baby and not just that, all the caregivers needed to sign too. While we were hoping Shrey would be a good candidate for cochlear implants, we were not going to wait for the candidacy decision to decide whether we needed to sign or not. As we progressed in this journey, I cannot be grateful enough that we made this decision. I wrote another post just on this subject here.
At 6 months of age, we learnt that Shrey had a good anatomy for cochlear implants. His cochlea was fully developed and the auditory nerve looked good too. He got his surgery at 9 months and was activated soon after.
Were both parents working? What did we do about childcare?
Yes, we were both working parents and continue to do so. We both love our work and have high demanding jobs. Quitting our job was out of the question for any of us. Before we knew about Shrey’s deafness, we had hired a nanny for him. However once we learnt about his deafness we started looking for an ASL fluent deaf or hearing nanny. It was very challenging to find such a person full time. After an unsuccessful search we went ahead hiring a hearing nanny who was willing to learn sign language. In parallel we were able to find 2 part time ASL fluent nannies.
How has Shrey’s language development been?
He signed his first word at 12 months old. In a year’s time, at 2, Shrey is signing and speaking in full sentences. He has excellent receptive and spoken language. His vocabulary is beyond tracking a handful of words. Having seen the language progression of my hearing daughter, I feel Shrey has always been at par if not ahead. It is the cutest thing to watch him be so expressive with his hands and body, describing how coffee spilled over or the umbrella closed. Considering just the spoken language, if he was a hearing baby I would do nothing but just be proud of how wonderful he is progressing. Given that he is deaf, I of course sometimes worry about the sounds which are not there yet. I cannot help wondering if it is just not there yet or if there is more to it in terms of not having access to that sound.
How was Shrey as a baby and what is he like as a Toddler?
Shrey is one happy baby who knows how to have fun. He loves water, is fearless and happy. He loves to read and watch cocomelon. When we go to restaurants we would let him watch cocomelon in sign language without having to worry about headphones. He loves ice cream and drinking water. When he is done drinking he likes to soak himself wet.
What do we plan to do about this childcare and schooling going forward?
Shrey will be 2 years old this month. For the coming year we plan to send him part time 2 days a week to the deaf school and 2 days a week to a spoken language focussed school for deaf children. We are lucky to have both these institutes at an accessible distance. To be honest we haven’t given it much thought beyond that. We will make our decisions when we get there. It will depend on how Shrey does at both the schools and what makes more sense for him and for us as a family at that point of time.
We sent Shrey to a home based daycare with 3 other hearing kids, what was that like?
For a short period of time we had to send Shrey to a home based day care with 3 other hearing kids of similar age. We had so many apprehensions about what he will do in that environment. We were lucky to find a place which was just so perfect. The other 3 kids were of similar age and he fit right in. He was 18 months old then. He had a few words and a lot of signs. The caregiver, lets call her Ms. M, was also new to having a deaf kid at her day care but she wanted to make sure she was doing the right things. She even tried to guess the words he might be signing and look up the sign for them. He was of course surrounded by hearing peers and was encouraged to use this voice too. And the learning was both ways. We saw a kid pick up the sign for DAD from Shrey. To us and to Ms. M, it seemed like Shrey was doing well and at par with other kids in everything including the language milestones. We loved the place and Shrey loved it too. It was hard for us to take him out of there. The only reason we did it was that we wanted Shrey to be in an environment where people were more aware of his deafness/hearing loss. Where people were watching out for his equal access at all times until he was old enough to be able to advocate for himself.
What is Shrey’s relationship like with his hearing sister?
My two kids are typical siblings who fight, play and love to do silly things together. Shrey’s big sister is for sure his favorite. I have an earlier post about this here