Monday, February 2, 2015

Raising a Child with Hearing Loss: Support and Resources


I am mother to a three-year-old who wears hearing aids.  It's not unusual for people to stop me when I'm running errands with my son and get asked, "What's he wearing in his ears?"  I'll explain he's wearing hearing aids and the next question we often get is, "Can't they fix that with surgery?"

About this Series

I'd like to share with you the story of what it's been like these first three years, raising a child with mild moderate sensorineural hearing loss.  It's been a long but educational journey, so I'm breaking it up into the following posts:
Part 1: Detection in Newborns
Part 2: Getting Hearing Aids
Part 3: Support and Resources - this post
Part 4: Developing Language and Communication
Part 5: Speech Therapy

Note: I am not an audiologist, speech therapist, or any sort of professional with training in hearing.  I am just a mother sharing my story of raising a child with hearing loss.  I am including references throughout my posts for those who wish to look up more information on hearing loss!

Support: Who Can Help?

Depending on where you live, there are a myriad of people who can help you and your child once s/he has been diagnosed with hearing loss.  Think of this group of people as a "team" that will support you and your child:

  • Audiologist - this is the person who will perform the testing and help you understand and quantify your child's hearing loss.  S/he will recommend the appropriate amplification given the type of hearing loss your child has and will put you in touch with any early intervention programs available to your child.
  • Early Intervention Specialist - (applicable in the U.S. thanks to IDEA) this person will probably be your most direct (and regular) contact as you ramp up to the idea of your child having hearing loss.  In our case, the specialist came to our house once a week until our son turned three and helped us with learning how to use the hearing aids.  More importantly, the specialist helped us understand what we as parents needed to do to support our infant to get the most out of his/her environment to develop as a child without hearing loss would develop.
  • Pediatrician or family practitioner - in addition to referring us to an audiologist, our pediatrician referred us to other specialists such as an E.N.T. and a genetics counselor.  As a safety net, in addition to the audiologist putting us in touch with an early intervention program, the pediatrician is also responsible for doing the same.
  • Otologist, Otolaryngologist or Ear, Nose, Throat (ENT) Physician - these resources are responsible for confirming that your child's hearing loss is not a medically treatable condition in the outer or middle ear.  They can also schedule further procedures to rule out other causes of hearing loss.
  • Parents of Deaf or Hard of Hearing Children - our Early Intervention Specialist put us in touch with other parents of deaf and hard of hearing children.  We actually had a program where we met every Friday with our children and this was another helpful resource.  Having other parents to meet with as we adjusted to accepting and understanding our son's hearing loss was incredibly important.  I took sign language classes with this group and we exchanged information on how we were handling getting questions from parents and people not familiar with hearing loss in children.
  • Adults who are Deaf or Hard of Hearing - talking to adults about their experience(s) growing up as child with this disability is also very helpful.  They are some of the best people to put you in the shoes of your infant or toddler.  They can also give you an idea of what to expect for your son or daughter as they get older.

Resources: Beyond People

In addition to getting advice and help from the above people, you can read literature and review information on the Internet.  Here are some key resources that you can look into online:

Want to Know More?

This post is just one in a series!  You can read more in the following posts:
Part 1: Detection in Newborns
Part 2: Getting Hearing Aids
Part 3: Support and Resources - this post
Part 4: Developing Language and Communication
Part 5: Speech Therapy

And if there is something specific you are curious about, feel free to email me at supersmartmama@gmail.com

Are you familiar with IDEA?  Do you know any children with a disability other than hearing loss?
If you live outside the United States, does your country have support for children with hearing loss?

2 comments:

  1. What great resources! I'm sure that they were and are all helpful but I can see how the Early Intervention Specialist and getting together with other parents weekly would be extremely helpful. Thanks for sharing more of your story!

    ReplyDelete
    Replies
    1. Angie, thanks for reading! I am enjoying sharing the story... and believe it or not, there is more to come!

      Delete

Related Posts Plugin for WordPress, Blogger...