Today I am continuing the theme of motherhood and talking with my friend and colleague Tina Morris. Tina’s son, Karsen, was late diagnosed. I chose to highlight Tina’s story, because as a mother of a child with hearing loss she has become a leader and advocate for others who are on the same journey.
So, welcome Tina, I know about your background, but can you please fill our readers in about your family’s story?
Sure. We noticed a change in our son, Karsen, shortly after his first birthday. He was suddenly ill with what looked like extreme vertigo. He lost all muscle control for several hours. It was so scary. We spent the day in the emergency room, and left with a diagnosis of sinusitis. But, we didn’t really agree with the doctor’s conclusion. We had a feeling there was something else.
The next day, Karsen traded his usual chatty babble for grunting and pointing. The sparkle in his eyes was gone. Something had drastically changed.
I requested a hearing test from our pediatrician and ENT, who by the way saw no concerns as he was hitting all the milestones for development. We were stunned as we sat in the sound booth and were told our son had moderate to severe bilateral hearing loss.
We left that appointment with no information other than we should expect a call from Florida’s early intervention service since we now had a child identified with a condition that could cause significant delays.
Of course I went home and Googled “deaf child.” I ordered several books on sign language and a book on literacy in children with hearing loss. I really didn’t know what else to do. I experienced several waves of emotions. I mourned for the vision of Karsen’s future because he couldn’t hear me now or the world around him. That’s a huge change in plans.
Instead of hiding, I started telling people what was going on in our lives. And I was fortunate to connect with some great resources. People wanted to help our family and resources started to surface.
Through my boss I connected with someone who had progressively lost her hearing as a child and was now teaching at a deaf school.
She insisted we had the opportunity to teach our son how to listen and speak. She told me sign language would be an option, but listening and speaking would provide a bigger world for our child. We had to act fast if we wanted this window of opportunity to feed and continue to program spoken language into Karsen’s brain.
This was the sign I needed on what to do next. I scheduled an appointment with the audiologist to be fitted with hearing aids and we discussed the possibility of cochlear implants.
I enrolled Karsen in an auditory-verbal program at Clarke Jacksonville. Again, I was fortunate to know my co-worker whose step children had hearing loss and went there. So, within one month of diagnosis, Karsen was aided and enrolled in a supportive program.
Wow! That’s great that you were able to accomplish that so quickly, and sounds like you had some early support that helped. During this time what other resources were you able to find as a parent? How did you look for resources and support?
In 2006, I really felt limited in our resources and support. We were basically told to go home and wait for a call from early intervention. There didn’t seem to be any sense of urgency.
The internet was really what I was left with. I spent hours in the evening researching hearing loss, hearing aids, deaf communication, sign language, cued speech, literacy of the deaf, cochlear implants and all the controversy that came along with it.
One of the biggest surprises came when we finally did receive a visit from the early intervention provider. This was after we had decided to pursue spoken language. The EI representatives told us we were bad parents for not choosing sign language for our child. That was the only track that they could see working. I was so thankful at this point that we already had made strong connections and that I had done so much research.
What did with connecting with others mean for you as parents?
I didn’t have much time to connect in the early years, so I tried to make the most of it. I worked full-time and any extra time was spent running around to various appointments. It was overwhelming to say the least. I wasn’t into social media either, which is so funny because now I see what an impact these connections can have on a community.
Connecting in person with other parents was vital to our sanity. I had a child with extra needs and a husband in the military who deployed for 6 months at a time. My immediate family was there to give me hugs when I needed them, but they couldn’t really relate.
Thankfully, we were in a listening and spoken language program and we received tremendous guidance from the therapists and the staff.
As our son aged, the program formed a toddler group that met a couple times a week. I found parents just like us there! They were just as frazzled as me and winging it just like me. We all had this panicky look on our faces like we were given a box with a puzzle in it, but life had taken than box out of our hands and scattered the pieces all over the place. We were all trying to find the pieces of that puzzle and put it back together.
I love that image of trying to put all the scattered puzzle pieces back together, because that is really what it feels like in the beginning. Was there any time when the connection you made with others was especially important for your family?
Yes! There was one time just before Karsen’s third birthday. We were preparing to make the transition to an IEP. I was feeling nervous and afraid about this next step. There was a group of elementary parents that hung out in the parking lot at Karsen’s school. We called them the “parking lot mafia”, because they would just stay there for hours and some all day since they commuted great distances.
I decided to walk across the parking lot and introduce myself. I wanted to know what they knew.
I learned more in those hours of speaking to those “seasoned” parents than any website, workshop, doctor, therapist or book could have taught me. It was the hours I spent standing in the parking lot talking with them that I realized the value of the parent-to-parent relationship. I learned from that day on not to recreate the wheel, rather, find those who are wearing the same shoes, and just learn from their walk with hearing loss.
Well said! Can you take a minute to talk about how you work at creating support for others now through your Facebook group and your advocacy work?
I’ve become more active in social media because I see more and more parents turning to it since they aren’t getting help or answers from the professionals they depend on.
My belief is that a well-informed parent is a child’s best protection. And, that really formed the basis for my Facebook group called “Parents and Caregivers of Children with Cochlear Implants.” I just saw other groups become a battleground about communication choices and I really wanted to create a place that offered support and strength.
In this group, the focus is on quality people and information. It’s truly a platform to share the information I would have wanted to know those first few years after diagnosis and what parents need to stay inspired or to keep growing in their knowledge.
One warning I have for new parents is to not get sucked into social media groups and the random advice people want to offer. Social media is great for an occasional virtual hug, but instead, spend your time forming relationships with those who have walked in the shoes you’re putting on and doing your own quality research those first couple of years.
Many parents in the group have connected and formed bonds via private messages, e-mails, phone calls, texts and even meet up in person at conferences or other outings they arrange.
How did you become involved in your advocacy work?
I’m a firm believer in don’t complain unless you’re willing to change it. And I really do encourage parents to begin to be the ones to speak up when they see that something isn’t working. For me, I saw the need to work towards changing legislation and funding to empower parents. It just seemed like a natural next step. My focus is on protecting parent choice and their ability to make the decision that is best for their family.
So, whether it’s spoken language, signed languages, or cued speech, children should not lose that protection of a competent program. And, parents should not have to do it alone.
The reality is that 90% of parents are choosing spoken language as an option for their deaf child, so these advocacy topics shouldn’t be considered controversial or unpopular. There is a desperate need to come out of silence and build a strong foundation of support for these options. There is so much we can accomplish if we all work together.
Tina, I think you make a great point. It’s so important that parents and organizations work together. I think the work that you have done is a great example of taking your frustration and the experiences you had when Karsen was first diagnosed and really turn them into something that helps others.
I want to thank you for taking the time to talk with me. And for those who are interested Tina’s Facebook group can be found here. Please keep in mind it is a closed group and once you express interest, Tina will send you an email to join.