Entry #4: Early Start
Although we received the confirmation that Bonnie had sensorineural hearing loss in both ears, the derivation of this diagnosis was unclear to many doctors. It was not an accident, illness or injury. I did have a very traumatic labor/delivery but in the end her APGAR scores were high. No NICU needed. So, the logical conclusion was that it was genetic. But what does that mean?
At first, Bonnie seemed like a typical baby. Aside from being the cutest baby that ever lived, she giggled, cooed, snacked, fed, cried and cuddled. Her daddy and I adored her.
Because Bonnie had hearing loss, we were automatically enrolled in a program called “Early Start”. I resisted the services at first and said that there was some sort of mistake again. My child isn’t deaf. Not that there is anything wrong with this, but she has a slight hearing loss but I’m sure it’s nothing. She will hear and everything will be fine. We won’t need your services, thank you.
According to the Department of Developmental services: “The Early Start Program is California’s response to federal legislation ensuring that early intervention services to infants and toddlers with disabilities and their families are provided in a coordinated, family-centered system of services that are available statewide. Infants and toddlers from birth to age 36 months may be eligible for early intervention services through Early Start. Based on the child’s assessed developmental needs and the families concerns and priorities as determined by each child’s Individualized Family Service Plan (IFSP) team, early intervention services may include:
•assistive technology
•audiology
•family training, counseling, and home visits
•health services
•medical services for diagnostic/evaluation purposes only
•nursing services
•nutrition services
•occupational therapy
•physical therapy
•psychological services
•service coordination (case management)
•social work services
•special instruction
•speech and language services
•transportation and related costs
•vision services
As articulated above, she ultimately needed the services. Many evaluations from different professionals proved she could use the help. What I didn’t know at the time was that it didn’t end with hearing evaluations. When Bonnie was a year old, her Occupational Therapist announced something. “I need to talk to you Anna-Lisa and Scott.” I remember thinking to myself, oh what does she need to tell us—she’s quitting, services are over. What was it? Nothing could have prepared me for what she was about to say.
“Something is wrong. Bonnie isn’t doing what other one-year olds are doing.” I hear a plane above zooming its engines in the distance and silence. Then, I stand up, walk towards the hallway and all I could hear was my voice saying…what? “Yes, I think there is a problem beyond her hearing loss. She isn’t sitting on her own, crawling, pulling up to stand or rolling over.” I am recommending that the regional center psychologist come in for an evaluation.
Thump. My head hit the floor. My heart stopped. My world collapsed.
HIST1H1E Syndrome 