Our daughter Keyrielle is 5 years old, but she looks 7. She was blessed with impeccable height for she stands 4 feet tall. She celebrates her 6th birthday on August 23. Her dad named her. It is derived from the Latin term “Keyrie-Eleison” which means “Lord have Mercy.” Keyrielle has lived up to the power of her name, simultaneously pushing us to petition God for help and thanking Him for his mercies.
First words to no words
The first 2 years of her life, Keyrielle developed normally. She met all her milestones such as rolling over, creeping, walking, and learning new words. I used to write down all the words she would say. She had over 80 words!
But a few months after, she just stopped talking. She stopped saying the words she knew and became a very reserved child. She also wouldn’t respond to her name or any verbal commands. We visited her pediatrician who advised us to get her hearing tested.
Is she deaf?
I sought assistance from our local ENT who took one look at my child, called her name, and when she didn’t respond, said, “This baby is deaf.” I told him, “If she is deaf, why does she hum the tunes to songs?” At that moment, the doctor’s phone rang, and Keyrielle looked right away in the direction of the phone. She began humming the tune of the ringtone.
The ENT was astonished and realized that our daughter wasn’t deaf. Unfortunately, he did not have the ear testing machine to do the ear test and recommended that we seek help elsewhere.
Nope, not deaf. But what then?
A family member told us to try Inspiration Center to get the hearing test done. We did, but Keyrielle was not cooperative and the doctor could not administer the hearing test. We felt defeated. We returned to her pediatrician with the unfortunate news. He then connected us with one of his trusted colleagues in Chetumal, Mexico.
This doctor had all the patience in the world. I will never forget how humble, generous, and professional Dr. Rodriguez was in conducting the hearing test. After approximately 3 hours of testing and analyzing the ear screening, the results were positive. Keyrielle’s hearing was normal.
Dr. Rodriguez even said, “Your baby’s hearing is so good, she can hear the trees rustling outside.” We were simultaneously relieved that she wasn’t deaf, but this only bought more questions. What was going on with our baby?
Discovering autism
The next day, we returned home to Belize to share the results with her pediatrician. He requested that we approve an assessment for autism. Keyrielle was diagnosed with moderate autism. She also got a second assessment from NARCIE through the aid of US volunteers, and the result was also moderate autism.
Autism? How odd! The only knowledge I had about autism was watching Oprah many years ago when several parents were sharing their journey with autistic children. When I was a young teenager, I always thought autism was an “American Thing.” I know that might sound weird, but I was extremely novice to this. It never dawned on me in a million years that I would one day have such a close encounter with autism.
Searching for answers
We gave ourselves some time to digest the news after the diagnosis. What happened after this was a deep dive into tests, trying to find answers.
We decided to do a brain examination to see if there was anything hindering her from developing. Kirk, Keyrielle and I visited a neurologist at the Belize Diagnostic Center who recommended an MRI to observe if there were any brain injuries, tumors, or undeveloped parts of her brain.
I could remember the day of the MRI. Only one of us could have been in the room with the baby.
I had to take off all my clothes and jewelry. I was so cold! I can recall seeing my little baby wrapped up in a blanket and being slid into this giant machine. I just sat there crying because I was so terrified wondering if she was going to wake up after.
The radiologist was so nice to me. He was kind, caring and understanding, and he encouraged me to be strong. At the end of that dreadful hour, the MRI results were in, and the results were positive. It exhibited a normal developing brain.
We then decided to do an EEG to examine the waves of the brain to determine if absent seizures were an underlying factor to Keyrielle’s condition. The results of this displayed some abnormal spike waves in the part of the brain responsible for speech.
At this point, we turned to medication. But none of these medications were successful. All were doing more damage than good.
Acceptance
The journey has been challenging, but the progress has been rewarding. I feel like I am all cried out. However, I am now at a place where I am comfortable taking Keyrielle in public. We go almost everywhere together. We even travel outside of Belize just she and I.
When I am out with my daughter, the world becomes a blur. It’s just she and I in a great big space. I don’t look to see who is staring when she has her meltdown or when she is flapping her hands and doing awkward body gestures. Others may see us as weird. But I just ensure that the time spent is a blast for us!
Finding strength
I also talk to her a lot. I believe that talking to her constantly will one day lead to her speaking.
As a mother with an autistic child, I want to encourage other mothers to keep the faith and indulge in self care. Do whatever is necessary to be physically, emotionally, mentally, and spiritually healthy. We need long life to take care of our children, so make self care a priority. Always remember that our strength is their strength. The strength of a mother and father is truly remarkable.
