I can't reiterate enough just how important a good support system is for families of D/HOH children. I know for my family, especially during the early days of Christian's diagnosis, that our strong, loyal, and close-knit group of family and friends in our support system is what got us through. They held our hands during the uncertainty, prayed for us during the myriad of tests, and listened to us cry over and over again.
Just as Chuck and I are working to understand Christian's hearing loss, our friends and family are as well. They have amazed us with their willingness to learn how to effectively communicate with our son.
I'm proud to include a guest post from one of my closest and dearest friends. She has been on the front-lines of our support team, and I asked her to write about her experience this past year.
Tina was my first friend to have a baby so needless to say, for me Christian was a highly anticipated, very important, special little guy. Christian was only a few months old when I took the summer off from work to study. I was so fortunate that summer as I got to spend a great deal of time with one of my closest friends and sweet Christian. At that time, Christian's diagnosis was unclear and Tina and Chuck were struggling with their own feelings and how they were going to handle Christian's different abilities. As a part of the inner-circle I didn't really know what to do other than to be there for my friends and their sweet boy. Once it was clear that Christian is deaf, Tina and Chuck faced that challenge head-on. I was so amazed and inspired by the strength and courage that my former drinking buddies had as wonderful parents!
As I had never really known anyone who was deaf, I was initially afraid how I would handle this. I mean, Tina had developed this whole support team through her blogging. These are people who actually get what she's talking about. Maybe my words of advice won't matter to her anymore. Would I say something that was offensive and ignorant? Would I use the wrong sign? Would I even learn how to sign?
But then I realized, here's the thing... Christian doesn't know he's different. He only knows his life as it is and as it has been. He's not going to be disappointed if I use the wrong sign! And my friends... Tina and Chuck are just amazing. They have learned sign language so quickly. They are raising Christian to be bi-lingual! He knows ASL and English. What a leg up on most kids his age. And Christian is just the same loveable, laughing, adorable, highly anticipated, very important, special little (well actually he's huge!) guy he always has been.
Tina explained to me their family plan for communicating with Christian and when I thought about it, it makes total sense. When I'm around Christian I try to limit the background noise and speak slowly and clearly to him. That's not really any different than if I were speaking to any child who's learning the proper words for the world around him. I've tried to master the few signs that he already knows. To me, this is really no different than if another friend was trying to teach her child to speak Spanish and thus asked us to say "agua" as well as "water." Once I got over my own insecurities of not being fluent in ASL, I was willing to try using it more. It's not like Tina and Chuck knew ASL before Christian was born! We are all learning together and I am all for learning regardless of the reason.
And then, there it was, my moment of clarity. I've never seen a more beautiful birthday party. All of Tina and Chuck's close friends and family were in their kitchen surrounding Christian with love and well wishes. We all signed Happy Birthday while we sang it! It was an absolutely beautiful moment when I realized - it does take a village. And I'm not going anywhere. If anything I've got a reason to start getting regular mani's if I'm going to be talking with my hands a lot more! And ASL is so fun! Spirit fingers for applause?!! I love it!
2 comments:
It's wonderful reading your friend's post....she sounds like a truly great friend!! She's right about her fears and understanding deafness. I can see you're on the right track by exposing Christian to all communication channel, using ASL and spoken language with him using his hearing aid. Christian's development has a lot to do with your attitude and approach.
I see that you've started the Cochlear Implant process and checking to see if Christian is a candidate. Without giving you my personal comment... I wish you nothing but success in your decision for Christian, You are his parents and you have the right to make your decisions, whatever they may be. Be sure that you ask every question under the sun and understand everything (both pros & cons).
Deafness is nothing to be sad about...there are many wonderful & successful deaf people living full lives (lawyers, doctor, dentist, Ph.D's, counselors, educators, professors, principals, superintendents, CPAs, and so many other professional profession). Whether Christian gets his CI or not...he will be successful because his parents will be behind him giving him the love and support to excell in whatever he does. I have no doubt about that!
hugs...
Wow...beautiful, kiss your girlfriend for me and let her know how important it is that she is there with you and for you...Jodi
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