Allison Richardson’s three-year-old daughter, Amelia, was born with Auditory Neuropathy Spectrum Disorder and has severe-profound unilateral hearing loss. At the time of Amelia’s diagnosis, family members and doctors advised her not to worry. But with three of Amelia’s older brothers diagnosed with Apraxia, a speech sound disorder, Allison knew the importance speech and hearing was to development.
While pregnant in 2009 with one of her sons, Allison began joining groups on Facebook for parents. She found these to be supportive networks where she could turn to for help and develop friendships. Once Amelia was born, she set out to find a Facebook group for parents of children with hearing loss, which is where she found the “BAHA Kids Club” Facebook group.
After learning about bone-anchored hearing systems (BAHS) and doing her own research, Allison brought Amelia to her ENT’s office to inquire about a BAHS. After learning the pros and cons of different devices, the personal stories of parents online, and about feedback and Oticon Medical’s great customer service, they advocated for a year-and-a-half to secure a device for Amelia.
180 degree difference with Ponto
Life for Amelia changed after being fit with the Oticon Medical Ponto 3 SuperPower. “She went from being an unfocused child speaking no more than five words to a focused student and dancer who now talks more than anyone at home. Her five older brothers say that Amelia has a bionic ear,” Allison said.
Amelia currently attends preschool and sits in a classroom with special needs and non-special needs students. The mix, Allison noted, provides special needs kids with mentors, and teaches non-special needs kids acceptance.
Advice for parents
Allison’s advice is simple when it comes to making a medical decision for your child: “Go with your gut and don’t compare kids”.
She continued, “Do what you think is best for your child, not what other people say is best, because you know your child.”
The journey to better hearing and finding the right hearing device for your child’s individual hearing loss can be long and sometimes feel like a never-ending waiting game. Continue to advocate for yourself and your child, reach out to online support groups, try all your options, and as Allison reminded us, “Don’t give up.”
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