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…