Archive for February 24, 2015
I found myself missing the child I once knew. The one I always referred to as “happy-go-lucky”, the one who loved my cuddles and giggled through my delightful butterfly kisses!
You see my son was diagnosed with delayed speech and language mid 2011 and then mild hearing loss at the end of 2011. The 6 months that followed his diagnoses were a roller coaster of fluctuating loss, pushing for intervention and finding support through online communities!
All this while my son spent the better part of 2012 not hearing his teacher. And me, yearning to connect with other parents.
All I found though were resources referring to profound hearing loss…believing that we did not fit the “category” of needing support since we were fluctuating between mild and moderate. Even our government hospital agreed that my son was not a “candidate” for intervention services.
It angered me that my son’s challenges and diagnoses could just be dismissed by the flick of the wrist. File closed. Move on. Come back in a year! Our system disappointed me, it failed us, and to this day, still continues to fail many families.
I made a decision to take ownership of my son’s challenges. My son’s worth was NOT going to be defined by his level of hearing loss!
I enrolled him at a school for the deaf, where he received the necessary intervention in 2013. He thrived! His language became more colorful and bright! Leaving home at 5:30am and arriving back after 6pm; a four hour journey everyday, was well worth the sacrifice.
Today, my son has a dedicated “Team Kai”, he attends mainstream school and still continues to receive intervention services privately. He wears bilateral hearing aids and uses his FM system in the classroom. His teachers are supportive and accommodating. He is the only deaf/hard of hearing child in a school of +/- 900 students!
So you may wonder, why do I miss the child I once knew, the “happy go lucky” boy? Sensory Processing Disorder (SPD)!
His hearing loss is no longer our biggest challenge. His SPD and behavioral responses is what’s got me “missing” the child I once knew…he has become my four seasons in a day…I never know what to expect when I get home.
Watching my child go from a loving happy go lucky boy to an angry, aggressive and intolerant child during a sensory meltdown is not easy; it is extremely unsettling. I am however encouraged when his teacher tells me how he advocates for himself at the age of 7. He asks to go for a walk where he can have some time to self regulate when the classroom environment becomes too noisy, or the tapping of a pencil on desk is making him feel “all funny inside” and sitting is becoming unbearable. He reminds his teacher to use the FM system when she forgets, and he works exceptionally hard!
Together we’ve been working on how to best “manage” his reactions to overwhelming sensory input. It’s our mom-son adventure!
His resilience has inspired me to reach out to other families. In 2014 I founded Decibels of Love, a parent-to-parent support group for families raising deaf/hard of hearing children. Together we grow. Together we empower. I believe that the smallest act of kindness CAN change someone’s world forever. All it takes is one family to advocate, educate and empower an entire community!
Early on in my own life journey I promised myself that I would always try to live my best life even in my weakest moments. It is this philosophy that’s allowed me to maintain my sanity, to draw myself closer to who I am and strive to be the best parent that I can be…
One would think that growing up with a hard of hearing father would have prepared me for this journey, but this could not be further from the truth. Through my son I realized that I also had a level of ignorance. It is only through my son’s diagnoses that I could truly understand my father’s world…a world of silence embraced by the knowledge that all things are possible if you believe and have the courage to be the change…
Kierra was born August 18, 2004 at 1:00 in the afternoon in Sulphur, LA at West Cal-Cam hospital. No one would have ever suspected that her incredible journey in life would start that day.
I am Kierra’s father and this is the story of Kierra’s journey so far after nearly 10 years on this earth.
We found out that Kim was pregnant right around Christmas time in 2003. We were so excited by this news and at the same time absolutely worried. The year prior, my wife had a miscarriage. This was a devastating time in our young lives and the new pregnancy only elevated our fears and concerns. Our doctor was optimistic about this new pregnancy. My wife was very sick for the first 3-4 months of the pregnancy and this caused me great concern for her health. As time passed, so did the morning sickness. After about 5 months, I could finally see and feel my baby growing inside her belly. All the testing that was done came back positive news. We went for the ultrasound to determine the gender of the baby. I was absolutely sure that we were having another boy. My family, on my side, produced a great number of boys and the odds did not look to be in the pink direction this time.
Well, low and behold the tech informed us that we were having a girl. I could not believe it, A GIRL?? That also brought on a new set of fears for me personally, not only do I have a 2nd child on the way but a girl. I had no clue what to do with a girl. Girls meant trouble. And by trouble I mean, boys! So now my strategy had to change. You know shotguns and cleaning them, and menacing threats to come in the future. We had already decided on the name that we both loved: Kierra Jade Welker.
The closer Kim got to the due date the more excited and scared I felt. My son, Dakota, was so happy that he was going to have a little sister to look after. (Although now he swears up and down he wanted a brother). I was happy to know what it was like to have a daddy’s girl and Kim was finally going to have a daughter to equal out the balance in the house.
We went to see her doctor on a regular visit and he asked her if she was ready to deliver. She was like “OH YES, PLEASE” and he scheduled her to be induced the following day. The labor was fairly short and Kierra came out in no time. I was there by her side as she labored for Kierra to come meet the world. I had never seen anything so magical and beautiful than the delivery of a child. I looked down to confirm that she was in fact a girl and saw her ear. The doctor proclaimed that she most certainly a girl and I to do my duty of cutting the umbilical cord, weighing and measuring her. Everyone finally got to meet her and hold her. I got to be there for her at night while Kim recovered from the delivery.
The doctor came in to talk to my wife and me, she had some news that had her concerned. Kierra had not passed the initial hearing test. She said that this was not uncommon in newborn babies because they sometimes have fluid in their ears. We were advised to wait a month and take her to an audiologist for another hearing test. The month went by as normal with me bonding with my princess and being there every day to help. I finally went back to work and Kim stayed home to take care of Kierra. The day that Kierra was to be tested for her hearing again I had to work. I was positive in my own mind that everything would be fine. I got the call that afternoon from my wife’s mother. The results showed that Kierra had very little hearing, if any, in both ears. I was initially in shock and heartbroken at the thought that she would never potentially hear me sing and talk to her. I was really upset and had to leave work to clear my head.
On the drive home, I decided that this would not change a thing. She would still have all the opportunities that any child would have. We would not treat her any different. There would be challenges of course, but we were ready to take them on. My wife was great; she dove into this life challenge head on. We started with teaching her sign language as soon as she could sit up; teaching her the basics of communication… eat, drink, sleep, potty etc. We started the process with the ENT doctor to see what her options were. Due to the fact that she did have a little hearing in her ears, we started with hearing aids. Getting a less than 2 year old to wear and keep hearing aids in was a challenge in itself. She adapted to wearing them and we started sending her to a speech therapist. She didn’t seem to make a lot of progress with her hearing aids. The audiologist spoke to us about the possibility of her getting a cochlear implant device. I was initially against such an operation because my baby was only 2 and I couldn’t fathom putting her through such a big operation.
We looked into the benefits of having such an operation and how it would affect Kierra. We decided to go ahead and schedule her for the procedure at Ochsner in New Orleans, LA. The big day came and I was so scared. I cried like a baby when they took her back for the procedure. Kierra was not scared; she was a real trooper. When we were able to go see her in recovery, I cried and held her. Again Kierra was a trooper and acted like nothing was wrong. Amazing behavior for a 2 year old after such a big operation. That was when her real journey began!
Kierra received her device a few days before her 3rd birthday. The activation was successful and she heard us for the first time that day. I cried again knowing that she would have the opportunity to hear.
Kierra started school that same year at College Oaks in Lake Charles, LA., The school offered classes for children with her same condition. Her development was amazing and she proved to be a very smart, intelligent little girl. She started to communicate with us more every day. She was signing well and learning to understand how to put words with her sign language. I remember every night before bed we would sign the alphabet. I believe this helped her to finger spell and at the same time learn the alphabet. Nowadays Kierra is very vocal and outspoken. There is not a shy bone in her body. She’s outgoing with a bubbly personality. She has done very well in school thus far and has had very little trouble keeping up with the rest of the class. Her doctors have been very pleased with her development.
Kierra is now in the 4th grade and has been an honor roll student ever since she started school. This year she participated in her school’s science fair project. She wanted to do something different, so we brainstormed ideas for her theme. She decided to do a project about the color of bottles and how external temperature affects the water inside based on their color. She used 4 different color bottles (clear, brown, blue & green) and did 2 separate controlled experiments. She cooled the water to 32 degrees F and measured the temperature of the bottles every 30 minutes for 4 hours. One was done inside and one was done outside. She recorded the temperature indoors and outdoors on a graph. She had hypothesized that the brown bottle would be least affected and stay cooler the longest. Her experiment actually proved otherwise. The brown bottle got warmer faster and the clear bottle was least affected by external temperature. She put together a very nice presentation and was able to speak to the judges and explain her experiment to them. She was awarded a 2nd place medal for her work and the chance to compete in the regional science fair project later that month. She was so excited and I was so proud of her. The regional competition was slated for Feb. 14th at McNeese State College in Lake Charles. Her entry was placed under the Environmental Science portion of the competition. There were hundreds of entries from all area schools and age divisions. She again presented her experiment to 2 judges and was able to tell them about her project with little assistance from her mom (sign if needed). Awards time came and Kierra was so nervous, she was literally sitting on the edge of her seat.
My wife and I were equally nervous because we knew there we were so many excellent projects she was up against. Kierra was awarded a 2nd place medal for her entry. She was so ecstatic that she ran to the front of the auditorium to accept her award. My heart swelled with pride at her achievement. It speaks volumes to her dedication to school and shows that her condition never held her back one bit. She never once used it as an excuse for any failures that she may have encountered. She’s a remarkable young lady and I consider myself blessed to be allowed to be her father. She’s had quite the journey in her young life and I only see great things for her future. She is a true testament to what perseverance can do. She so far has played very well with the hand she has been dealt.
I know this may seem very biased because I am her father. But that’s what fathers are for, to support their children and raise them up to be remarkable people. Kierra is quite the spirit and spending any time with her, anyone would most likely agree. Thanks for your time.
Kierra’s loving father,
Last weekend my husband and I hosted a couple friends for dinner and an evening at our house. The wife in this couple is deaf and her husband is a sign language interpreter. As we sat down at the table to eat an ease fell over me. There was no need to feel like I needed to fake understanding with nods or smiles. I have a moderate severe hearing loss and I usually feel anxious before a meeting like this one. That night was wonderful we had something in common, lack of hearing and knowledge of lack of hearing.
We need to find where we belong. We need to find a community or a group where we all get each other. If that group is about sports, animals, children, or in this case hearing loss. Having a group or even a few individuals that understand is a comforting thing. It doesn’t turn into an embarrassment when you ask for something to be repeated or reworded. You don’t get the dreaded “never mind.”
I grew up in Minnesota in the metro area. I was a child with an ear infection every other day it seemed. Ear tubes put my ears more times than I care to count. I know I grew up with a hearing loss now that I think back on my childhood. I never understood how people could understand a whisper. Someone putting their mouth to my ear was just hot air I could feel. Was that how everyone experienced this? Being at a friend’s house and having them all talk at once or talk with music playing, none of this I could understand. I wondered why this seemed so easy for other people. Why did whispering between girlfriends seem fun not an anxiety filled moment. As I grew up and went to college (majored in Communicative Disorders) I realized more and more that yes I had a hearing loss. I just had to get to the point of acceptance.
The past couple years I have come out of my shell and embraced hearing loss as best I could. Hearing aids were purchased. My secret was out. I joined a couple groups that deal with hearing loss and being hard of hearing. I started to put my feelings on to paper or a computer in today’s vernacular. I started my blog Musings of a Momma. I started this blog as a stress reliever–writing in the evenings. When my hearing took another dive down, I decided to write more and focus more on being a hard of hearing mom. My writing got notice by the HearStrong Foundation where I was named a HearStrong Champion. This has to be one of my proudest days behind the birth of my children.
One thing I wanted for my children was to make sure their hearing is on track. I remembering taking my daughter to an audiologist and she tested around a -10db across the board. I guess she is hearing fine! My son came along five years later. He didn’t babble much or start talking till three years old. I had some people telling me autism and some telling me he couldn’t hear. We pursued both paths with him. He was found to be on the autism spectrum high functioning. When we went forward on his hearing we found out he had a mild conductive hearing loss. We continue to have his hearing checked every six months. It has dropped at times and we have done tubes, and adenoids and tonsils out. I just took him to the audiologist last week and his hearing has dropped another 10db. We are off to the doctor this week to see if something medically can be done. He has had no ear infections or fluid in his ears so I am stumped. Then we head back to the audiologist. Just a wait and see with him. He does use the FM system at school where he is in 1st grade.
A great resource we were told about was MN Hands and Voices. Our family attended a family event last spring. Our whole drive my husband and I wondered if we would fit in, our son only has a mild loss. What we found was open arms of acceptance and a wealth of information. We learned a mild loss is a loss and it does affect a child at school. We had some IEP questions answered and found some new friends in the process. It was like the dinner we had last weekend we found that place we belonged. We found a place that understands our questions, doesn’t get annoyed with the What?? If you didn’t hear something right away, they got it. I want my son to know there is a place that we belong and people that understand. MN hands and voices has been that place for our family with our son this past year.
Sara B Lundquist