Special Needs Highlight: Deafness

What is your child’s special need?

Our daughter, Gigi, is profoundly Deaf. She doesn’t hear anything. When her brain was tested for its response to sound, the Audiologist told us that they maxed out the equipment. Gigi would feel the vibrations, but wouldn’t hear the noise, if a jet engine took off right next to her head.

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What has been easier than you thought?

I had so many preconceived notions about parenting a Deaf child. I thought bonding with her would be SO much more difficult because she couldn’t hear me tell her that everything was all right. The reality is though she’s never heard anyone tell her that. She looks to us for visual cues about our emotions. She bonds through touch and cuddles, just like every other child who is adopted internationally and doesn’t speak the same language their new parent does..

What has been harder than you thought?

Finding our way when it comes to educating Gigi. Who knew that I would have to fight this hard to educate a Deaf child? I mean, society has been doing it FOREVER, right? Society has, but not always well. It’s REALLY important to find out what your community offers in the way of educational support prior to bringing your child home. Interpreters are expensive.  Sometimes, you have to fight your district to offer one. Consider how far you are from your local School for the Deaf. Are you within outreach distance? They have been a WONDERFUL resource for us!

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What has been the biggest challenge?

Learning American Sign Language (ASL) has been the challenge I thought it would be. Learning a foreign language for your kid is no joke. Gigi has been home for nine months and had ZERO language when we met her. She signs an amazing amount now. We stopped counting at 200 signs. Now the challenge is staying ahead of her. I take signing classes so I can keep teaching her. Pretty soon though, she will know more than I do and I’ll have to tell her, “Slow down, fingerspell please.” She is amazing like that.  I encourage every parent considering adopting a child who is Deaf to learn some sign, no matter which route to communication you might take down the road.  Sign is accessible now, nearly any child can do it!

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Gigi is signing “train”

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And “GO!”  She loves the train at the zoo.

What does day to day management of their need look like?

Audiology appointments were plentiful at the beginning. We’ve decided on a unilateral Cochlear Implant for Gigi. This will help her access the hearing world when she wants to. She will always need sign, but this will be an additional tool for her. As we move toward surgery, appointments will increase again and then after the implant is activated we will have quite a few mapping appointments.

Otherwise, managing Gigi’s deafness is a non-issue. Sometimes, I do forget she’s Deaf momentarily, and as she runs away from me like the average 4-year-old does, I might shout out “GIGI!!!” When I realize, ‘yeah, that won’t work’ I have to RUN after her. Parenting a Deaf preschooler is a workout somedays.

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When families consider this SN, what specialists should be in their area? What should they make sure their insurance covers well?

You’ll need a Pediatric Audiologist, but you can find those pretty much anywhere.  You’ll want to research and find someone who supports you in your choice of communication route.  Some Audiologists want you to ONLY choose one route to communicate.  That wasn’t our choice.  We wanted a little of a few methods.  Finding someone who agreed to that was a challenge.  Honestly, though, it’s as important to consider your educational resources, as I mentioned above.

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Have you had challenging interactions with other people about their special needs? How have you responded?

People don’t understand that having a Cochlear Implant isn’t a “cure” for deafness, and that Gigi may never speak. Our extended family doesn’t know any ASL. That’s hard. They can’t communicate with Gigi. It’s that way in a lot of social settings. It’s isolating for her. We make sure to involve Gigi heavily in our local Deaf community. She attends a local preschool for children with hearing loss. This has been GREAT for her.

What is the best thing about parenting a child with this need?

It has been amazing to watch a child come to our family locked inside of herself, no way to communicate, and watch her come alive. A whole new world opened up to Gigi when she had a way to tell us how she feels and what she is thinking. To watch her learn new signs, go to school and make friends, it has all been amazing. All the running after her, all the hours spent in signing class, all the IEP meetings, I wouldn’t change one single second of our choice to bring her home.