Family Story: Meabon Family
This text is from a Family Testimonial written for the University Lions Club Auction on May 16, 2015 by Listen and Talk parent, Jennifer Meabon.
My name is Jennifer Meabon and I feel so privileged to have the opportunity to share with you how integral Listen and Talk has been in our family’s journey with hearing loss. My husband James and I are parents to 5 incredible children. Phoenix is our middle child, and was born with bilateral moderate sensorineural hearing loss. She is currently in her third year at Listen and Talk and attends a full-day pre-kindergarten class.
I will never forget my pregnancy with Phoenix. James and I had been married almost 12 years and had two teenage sons when we decided we would like one more baby. Our first trimester ultrasound showed that we were having twins and we quickly tried to wrap our brains around what that meant for our family that had been chugging along as a family of four for quite some time. Scary as it was, we were excited about what was in store for us. We never guessed that our pregnancy would be met with so many difficult trials or that our family’s identity would be shaped by a diagnosis yet to come.
Our first trial occurred in the middle of the first trimester. Gage, our 15 year old son, ruptured his appendix, which put him in the hospital for a number of weeks and at home on an IV for longer. He was incredibly sick, and almost died, which led to a tremendous amount of stress. I ended up miscarrying one of the twins in an event known as “vanishing twin syndrome”. Gage pulled through and we settled into the fact that we would only be having one little one and counted it a blessing.
It was early into our second trimester that I began having a number of strange symptoms I had never experienced with a pregnancy before. I itched like I had been bitten by a hundred mosquitoes and would use a brush to itch my limbs as well as the palms of my hands and the bottom of my feet. I was feeling really ill and I noticed that the whites of my eyes were yellow. The test results of my liver enzymes were through the roof. I was immediately put on a medication and was diagnosed with cholestasis. The medication certainly helped the symptoms, but I was told that I would have to continue to be monitored and would need to be induced so I could deliver the baby by 37 to 38 weeks—or risk losing the baby.
By third trimester I began having what was referred to as “gallbladder attacks” and I can honestly say, I have never in my life experienced a pain like it. Not even childbirth compares. I was immediately put on a zero fat diet. I was pregnant, starving and eating such a light diet that I was losing weight instead of gaining.
They decided to induce at 37 weeks. The first induction didn’t work but caused horribly tight contractions. I worried so much about my poor baby being squeezed so intensely. They ended up sending me home for a week. I returned at 38 weeks to be induced again. Once again, the medicine they were using was not working but only causing severe contractions.
After many hours of the team decided to break my water. This kicked in the most intense and fast labor I have ever experienced. The pain was so intense I knew something was wrong. I could feel something hitting my hip bones and I could barely breathe. Phoenix ended up coming out shoulder first and her head was so deformed that we all just looked at her in horror. Yet there she was, alive and despite the look of her head and some jaundice, she was doing well.
They kept us in the hospital a few extra days to keep an eye on her. She became Phoenix Anneliese Lyric Meabon, as she was literally born out of the ashes of a horrific pregnancy situation. She was a delightfully sweet, snuggly, and calm little baby. The day before we were scheduled to leave the hospital, they whisked her away to do her newborn hearing screen. Having had older children, this was new as I didn’t remember them doing this in the 90s when our older boys were born. They came back and in a breezy, non-concerned tone said that she didn’t pass the hearing screen but that it was “normal” to have this occur. We took our beautiful baby home without too much concern, but a gentle tug in the back of our minds.
We were enjoying our sweet little girl who was quickly doted on by everyone around her. We hadn’t had a baby in the family in a while and everyone was enamored with her. She would quickly engage us with her eyes and smiles. We would coo and she would coo right back. She LOVED music and any singing caused her to calm down and snuggle in. She could recognize songs she knew and her body would respond to it. Our dog barking when someone came to the door caused her to startle. If we had any nagging left in our minds they were quickly explained away by what we naively thought was “normal hearing”. Her dad and I both have degrees in neurobiology. We had studied the auditory system and we let our meager understanding guide our lack of concern.
It was at Phoenix’s 3 month check up that our pediatrician encouraged us to have the test redone just to be sure everything was in fact fine. The results were the same; she had failed the test. I can honestly say that this whole period is a blur to me. I remember the audiologist saying there wasn’t much they could do with the information they had. They needed to do a BAER test which would mean they would need to sedate her. Being frantic and protective parents we had read so many scary reports about sedating children that we were not willing to do it. I didn’t realize the implication of hearing loss at this point. I had known many kids who had received tubes later in childhood and all were fine. I had no real understanding of what a sensorineural hearing loss was. I wish our audiologist would have called my ignorance out. I wish she would have not been so nice to me but would have told me that I was making a huge mistake.
We took Phoenix home and went about our life in a typical fashion. She grew and she thrived. She began talking around 7 months and could string words together. She could point out colors, numbers, letters, animals, make animal sounds, body parts—you name it. We did notice that she would drop the last sound off of words. Ball would be “bah”, juice would be “ju” and so forth. She would also “front” all of her words. The majority of her words she would produce with a “D” “T” or “B” sound.
Before her 2nd birthday we finally decided to do the BAER test. By this time, I had given birth to twin boys born when Phoenix was 18 months old, who both easily passed their newborn hearing screen. The day of her diagnosis is forever etched in my brain. I went in convinced she had hearing loss before hearing the results. Her speech was beginning to convince me of this. James was still not willing to think this. Her test results came back; she had a bilateral mild to moderate sensorineural hearing loss. She would be fitted with hearing aids which she would have for the rest of her life.
Not only that, we would need to continually monitor the loss as it wasn’t terribly uncommon for children to continue to lose hearing. Until they could figure out what type of loss it was and what caused it—this was the reality. I was alone when I got the news. James was out in the waiting room with the twins and Phoenix and I were with the audiologist. I remember accepting the news easily and I think our audiologist thought I was in shock. She kept repeating things to me, waiting for the tears, I imagine.
The tears didn’t come, but I felt guilt like I had never felt before. I was the reason my daughter had not been fitted with hearing aids earlier. I felt a stone settle in my stomach as this audiologist was not as easy on me as the first one. She told me that she had gone 2 years not hearing certain ranges of sounds and that this would probably affect her speech and definitely affected the way her brain had wired. She couldn’t give me any reassurance that her speech would be normal. I felt terrible. They walked me through a bunch of information I wasn’t absorbing and I left with my sweet little girl to meet my husband in the waiting room. James instantly began to cry. He really wasn’t expecting the news. We really felt it was just short of a death sentence. We had no history of hearing loss in the family and we didn’t have any experience with sensorineural hearing loss.
I was at work the day that her dad brought her to be fitted with her hearing aids. He said the moment was beautiful. He described her as lighting up when she put them in and had them turned on. We never had an issue with her not keeping them in. She loved them and wore them all day from day one. She called them her “pink ears” and wanted to show them off to anyone who would look at them.
My first reaction was concern for her as she went through life. Would she be made fun of? Would she be able to do everything everyone else does? Would it affect her learning? Could she swim? Go out in the rain? You wouldn’t believe the myriad of thoughts that raced through my brain. My brain quickly flashed to the after school specials about disabilities I saw growing up in the 80s. I saw her in a self-contained classroom, her future limited. I was crushed. My brain spent time in a dark place as I went about reading all I could about hearing loss. Outcomes and statistics for kids with hearing loss in education were worse than for those who were deaf. How could this be? What was happening with this group of children? I knew that I would do anything to give her the best chance she could possibly have.
I was faced with the decision to either put her into a program where she learned sign language or a listening and spoken language program. I felt completely inept at making this decision. What did I know about hearing loss? So far, I had managed to mess it up pretty badly. Thankfully, we were able to meet staff members representing each option before we had to make our decision. Tara, an early interventionist and audiologist from Listen and Talk came to our house that evening, and I knew instantly Listen and Talk was the best choice for our family.
Tara was part of the Early Intervention program and she came to our house every week to work with Phoenix and to teach us how to work with her. I learned so much from Tara over that year. She was not only knowledgeable, spunky, fun, and a perfect match for Phoenix, but she was my lifeline and sanity when I doubted my capabilities. I could never have survived that first year without that lovely woman and I am forever in her debt.
She walked with me through the Individualized Education Program (IEP) process and was Phoenix’s most valuable advocate for services. She was paramount in Phoenix getting Listen and Talk as her school placement. I needed her immensely during this time period as she was bold enough to look at me and tell me “Yes, things might be hard, but children with hearing loss do fine with the necessary supports.” She would remind me that I needed to fight hard for my child and that my advocacy for her and my commitment to hitting early intervention intensely will make all the difference. Oh yeah…and she was always going on about listening checks and Ling sounds. I had no idea what an important part of our lives those would become! ☺
Tara encouraged me to tour Listen and Talk and see what it might have to offer as placement option for Phoenix . I also viewed the district preschool options and felt so strongly that Listen and Talk could best meet the needs of our family and Phoenix’s development.
Touring Listen and Talk for the first time was an emotional experience. After the tour, I got into my car and I literally broke into tears. They were doing everything that I had been reading about that would be best practices. The children I saw were happy and talking clearly, the teachers were loving and energetic, the environment was quiet and peaceful. I knew right away I wanted Phoenix to attend Listen and Talk and nowhere else. The class size was small and personal. The curriculum was language-rich and the teachers worked directly on the speech goals that were set in therapy.
Phoenix transitioned into Listen and Talk’s Blended Classroom half-day preschool the day after her 3rd birthday on October 3rd. We became a part of this amazing thing—this amazing family—and at the time didn’t even realize it. This little school housed some of the most incredible people I have ever had the pleasure of knowing. From the front office into every classroom there is not a person in that building that is not 100% invested in the lives and futures of those children. Phoenix felt loved from the very beginning and didn’t even want to miss school when she was sick.
Her first year at Listen and Talk, she had the “A Squared” team—the dynamic duo, Ashley and Addie. I can’t even begin to describe what amazing women these ladies were. When Phoenix started at Listen and Talk, her speech was unintelligible. Even us, her parents, could only understand about a quarter of what she said. Ashley and Addie quickly became versed in Phoenix speak. I wasn’t working that year and was able to spend time going on field trips, attending listening and spoken language therapy with the wickedly talented Kristin, and being a part of this amazing school. Phoenix was a timid child when she started, afraid of strangers and would cry. I worried about her so much that first week. From day one she was completely transformed. I watched her grow into this gregarious, social, and happy little girl. She LOVED seeing other children with hearing aids. That piece alone meant so much to her.
This incredible team would check her hearing equipment, conduct her sound checks, and work on her speech goals in concert with Kristin. They taught her to advocate for herself and her hearing devices and they were paramount in helping us navigate what it meant to be parents of a child with hearing loss. They normalized and demystified our new reality. We were also able to meet so many incredible parents in a similar situation as us. It was empowering and hopeful to watch those who came before us and their amazing kids.
This really was the first time I started to see that this was not going to limit her future. She was going to be alright and I could breathe out that breath I had been holding since her diagnosis. It was a scary place to be when I first heard that diagnosis but Listen and Talk made it so easy. I started to see hearing loss as a blessing! That Phoenix was part of something special and though challenging, she was being offered an identity that would grow her compassion, her empathy, and her resiliency.
Phoenix made such great gains in her first year, we were still concerned that the 2 years without being aided gave her a significant deficit. We would always be reminded of this when we would hear children talk who had been aided since infancy and my guilt would bubble back up. With district support and supplemental help from incredibly generous Listen and Talk donors, Phoenix has continued to attend classroom and therapy services.
We were terrified to have her transition out of Ashley and Addie’s classroom and we were convinced that she would never again have such outstanding teachers who understood her and loved her. Once again, we were proven wrong. For her second year as a full day preschool student, she had Pam and Becky. Not only were they gurus of outstanding classroom management, they were every bit as loving and kind as her previous teachers. She easily transitioned into her new class and really took off.
This year, we saw incredible gains in her articulation skills. Kristin hit this area hard and we bumped up to 2 days of therapy per week. I was convinced that Phoenix would never be able to talk clearly and Kristin, along with her teachers that year, got her to an incredible place. I would watch in fascination as Kristin used flavored tongue depressor sticks and board games to meet Phoenix’s speech goals. I remember hearing the goals and thinking it would never happen. Sure enough, Kristin could always get her there much to my amazement. That second year we also saw huge gains in her vocabulary, advocacy, and social skills, and in so many other areas. I really feel she would not have made all of those gains without that full day experience and 2 days of therapy each week.
The other piece of the Blended Classroom program that I have yet to mention is that they do so many enrichment pieces. There is always a theme to the month and each week a sub-theme. The teachers work to integrate vocabulary, sensory experiences, art, field trips, speakers, and so forth into each theme. Phoenix has had so many outstanding experiences that other children her age do not get to experience and it has been paramount in her learning new vocabulary to describe the world around her. It has assisted us in ways that Listen and Talk may not even realize such as their field trip to the dentist office. For a child with hearing loss, that experience can be scary and overwhelming but this gave Phoenix the understanding and language to use so that when she goes to the dentist, there is no anxiety or fear.
Phoenix is now in her 3rd year at Listen and Talk. I have been so thankful her birthday falls after the cut off for kindergarten as this means she was able to go an additional year. Of course this also meant that once again, it wouldn’t happen without the generous contributions from donors. I often marvel at how much this little school is able to do and how far they can take children. I realize that the cost to do that must be significant yet they have always met the needs of our family.
This year, she has had yet another outstanding teaching team. The sweet and incredible Susie along with the bubbly and charming Shotzi—who has a personality that is quite similar to Phoenix’s. This year, I have watched her grow in ways that tell me that she is no longer a cherubic, chunky-cheeked toddler and is a full-fledged pre-K student.
It is hard to believe that we have been working with Listen and Talk for 4 years, and in that time, our daughter has grown into a vivacious, confident, brilliant little ray of sunshine before our eyes. She chats on the phone with relatives and they can fully understand her! She replaces her hearing aid batteries, marks it on the calendar, puts her hearing aids in and takes them out, advocates for herself and explains her hearing loss to anyone who asks. It is this piece that brings tears to my eyes. Yes, I am immensely grateful for her ability to speak, for the staff at Listen and Talk for holding our hands through the process of becoming a family with a new identity, but it is this other part that is so hard to put into words—this shining confidence and sense of pride to be a child with hearing loss. That she does not see herself as a child with a disability but a child with a unique attribute that makes her special and who she is.
Phoenix recently visited a kindergarten class and proudly declared that she wanted to tell everyone about her hearing aids! She made them sound so cool that other children were pretending that they had hearing aids at recess. The teacher was so impressed by Phoenix, but really, she is no different than any other child at Listen and Talk. We can take a deep sigh of relief each day we send our kids off to Listen and Talk as we know they will be loved, valued, and taught to be these remarkable children that just so happen to have a hearing loss. Who wouldn’t want to know their children are truly encouraged, loved, and nurtured in such an authentic way?
I can barely keep from tearing up at the realization that this will be Phoenix’s last year. Thank you Listen and Talk for being an integral part of our family for so many years. We would have never made it here without you. Listen and Talk has not only provided Phoenix with the foundation she will need to be successful, but the foundation we, as parents, will need to help her realize her full potential. I am so in debt to all of the staff and teachers who have taken so much time to support us in meetings, on the phone, and via email on almost a daily basis. I think the strongest proof that this school is special comes from Phoenix herself: “My teachers just love me so much!” That she feels so confident to make that statement makes me smile and confirms that we absolutely made the right choice.
