February 2013 Newsletter

Dear Hands & Voices Family,

1-3-6 is the “be-all” and “end-all” standard in the world of Early Hearing Detection and Intervention (EHDI), Audiology, and Early Intervention. Translation: the goal is to have every newborn screened for hearing loss by 1 month, diagnosed by 3 months, and enrolled in Early Intervention by 6 months.

At a recent National Initiative meeting, it was mentioned that rarely are the parents’ 1-3-6 emotional journey being addressed (unless the family is connected to Guide By Your Side).

As parents, we know that the first month with our newborn child we are sleep-deprived, changing a lot of diapers, adjusting to the nursing regiment, and usually getting pooped and spit-up on on a regular basis. In the midst of this, we are bonding with our newborn and forming our family.

For parents whose newborn did not pass the newborn hearing screen, we have an added level of emotions that include fear, confusion, and stress as we add more appointments to our schedule.

This all takes place in months 1 through 3!

Once we have a confirmation of hearing loss, I think our 1-3-6 emotional journey begins anew. The professionals who begin working with us through Early Intervention have a mere 45 days to evaluate and make our kiddos eligible for services, including the initial IFSP meeting. That creates a host of stress for parents as we try to figure out everything from understanding hearing loss to the new vocabulary we need to learn to educate our family and friends.

The parent journey doesn’t fall neatly into a

1-3-6 package. For some, it can take several months to get through the initial grief. Other parents go straight into the ‘6’ mode of advocacy and gathering information. Our Guide By Your Side program is extremely helpful to parents through this journey. Parent Guides help our parents ease into and through each phase with the goal of guiding parents into the role of ‘leader’ for their child. It can be challenging for some parents to step into that role; we usually do not feel well educated or confident parenting our deaf/hard of hearing child.

Sometimes a parent just needs permission to step into that leadership role. I have recently seen two different parents whom, when given ‘permission’ from their Parent Guide, have become such incredible leaders and advocates for their children. Their transformation has been truly inspiring!

Parents, we are the case managers of our child(ren). We are the ones responsible for their educational, social, and emotional well-being. We are the ones choosing their mode of communication and type of education. We are the “accidental leaders” in a way we never planned.

Warm regards,

Helen

This month’s articles:

Oregon’s Key Performance Measures:

http://handsandvoicesor.org/oregons-key-performance-measures/

“Setting D/HH Standard for ‘Appropriate’ Education”:http://handsandvoicesor.org/setting-dhh-standard-for-appropriate-education-janet-desgeorges/

 

“God puts rainbows in the clouds so that each of us – in the dreariest and most dreaded moments- can see a possibility of hope.” – Maya Angelou