Monday, February 8, 2010

An Open Letter to Parents of Deaf Children

Dear Parent,
As my last public blog post, before I go private on February 15, I wanted to write to the parents of deaf children out there. In particular I wanted to write to the hearing parents who have just found out that their newborn baby is deaf. I am not writing this to tell you what to do, but just as advice from someone who has been where you are. We are not perfect, and we haven't figured everything out yet, and the choices and decisions we have made may not be the same decisions and choices you make, and that's ok. There are just some things I wish I had known when I was where you are.
The first thing I wish I had known was that it's not the end of the world. I know how you might be feeling right now. Everything you had ever envisioned for your child, now seems to be linked to the ability to hear, and you might be wondering what your child will become now. Your child will be wonderful. There is nothing to hold them back from that. Having a deaf child is a lifestyle change, but it won't keep your child from a happy childhood and growing up to be a healthy, successful adult. I remember thinking about Johnny growing up deaf, and I thought, well he can't play sports, he won't like music, how will he learn how to drive? Now, I realize he can absolutely play any sport he wants, there's no reason why he can't like music, and what if he doesn't? And driving? He can absolutely do that. I also had concerns about him dating and finding someone to marry, him getting an education and getting a good job. I have met enough deaf adults now to know that he has every opportunity to be just as successful as any other child.
The other thing I wish I had known was that the Deaf community is wonderful and ASL is a beautiful language. I just want to pause here and say we did get a cochlear implant for Johnny, and are planning to do so for Eliza. I remember when we found out about Johnny's hearing loss, we felt like we were in the middle of a whirlwind, and when we got out, we were committed to an oral only approach. The doctors and nurses and audiologists definitely push it a lot. One audiologist discouraged us from using sign at all with our kids. We were still in the phase where we felt like all of our dreams and aspirations for our children was linked to hearing. We wanted our kids to be "normal" like all of the other kids. The problem for us was that we had to wait 6 months before Johnny would be implanted. He was already almost two. That would be another 6 months with no language. We made one decision then to go against what the professionals were telling us. We decided to sign. As a result, we sought help. We began having a deaf mentor come to our home, and I began taking ASL classes in school. We began going to deaf activities where there was a lot of signing. Johnny caught on to ASL very quickly, and he loves it. The other thing we noticed was how open and accepting the deaf community was to us. We couldn't believe this was the same culture and community the professionals had told us was very closed off and unwelcoming to newcomers. They will welcome your child and will help you. Why would you exclude yourself from people that have been where your child is? You have never been deaf yourself, so you don't know what to expect. The deaf community will love to see your child, especially if you are making an effort to learn ASL and teach it to your child. We have met so many wonderful people in the deaf community. The other thing we loved was that as we went to these activities, we noticed a difference in how they saw our children. There was not the same feeling of can't and disability. The saw our kids as smart and cute and great. They saw them as normal.
The last thing I would say is focus on what your child can do instead of what they can't. Don't think "can't hear", instead, think "deaf". There is a difference. The first focuses on something your child isn't, while the second is something your child is. They will always be deaf. despite what doctors or audiologists might say, there is no cure for deafness. So don't look at it like a disease or ailment. Teach you child to be pleased with who they are, to be pleased with being deaf. That will start with you feeling that way. Ask yourself if you love your child any less because they are deaf. When you find out that the answer is no, then you will start loving your child because they are deaf. Cochlear implants are wonderful tools, but please consider getting to know your local deaf community. Please consider teaching ASL to your child and learning it yourself. You will only find positives when you do. You will find more friends and allies to your cause, and you will find new ways to appreciate how truly amazing your child is. You will find talents and skills you never knew your child had. In short, it will only bless your lives. It has definitely blessed ours.
Now there will be some who read this who will totally disagree with me. That's fine. I truly believe that you are doing what you feel is best for your child. Understand that I am too. This is just an invitation to parents out there who are unsure or who may be wondering. It is an invitation to step out of your comfort zone, try something new and see how it could be a positive force in your life and in the life of your child. I am not a professional, I have no degrees, so really, what do I know? All I can do is tell you how our experience has been. I would never ask my son or daughter to give up signing, and I am grateful
for it and our local deaf community.
Thank you for reading this. And thank you to those who have been reading my blog these last few months. I have enjoyed sharing my life with you, and look forward to continuing to share in a more private fashion.
Sincerely,
Jake

5 comments:

  1. Thanks....as the parent of a hard of hearing toddler, this would have been exactly what I wanted to read when I came home that night after the ABR, and googled kids with hearing loss.
    I know you want to go private...but can you do it while leaving this up? I'm sure some folks will disagree with what you've said...there are always people who do things differently, and thats good and its ok to have different views. But it's nice to hear others going through the same journey, and to know that it's going to be ok, no matter which road we decide to walk down.
    It would be nice to have this letter come back on a scared parent's first foray into this new world via an internet search.
    Good luck to your family.

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  2. Well written honestly! As a deaf individual who has an implant, this couldn't have been written any better. Granted there are NO RIGHT or WRONGS. Parents do what they feel is best for their child and hope for the best. But I, myself grew up in the hearing environment and despite my deafness - I was mainstreamed in a public schools and played sports all my life (even today at the age of 39). Just because one is deaf doesn't mean they can't do anything which is wrong. Deaf individuals can do whatever they want - there is no limitation unless you "SET" the limitation. I consider myself pretty successful individual who is working for a Fortune 100 company and is fixing to graduate with an MBA and will be pursuing another Masters afterwards. There are deaf lawyers, doctors (yes doctors who actually practice medicine), and deaf professionals. But it is all on you as a "parent" to give them that attitude that they can.

    Now I do have to say this, I do APPLAUD you for utilizing ASL and spoken English both at the same time. Whenever I run into parents of implanted children and they are in awe and shocked that I sign. Truth be told, ASL is my first language, but I do speak very well and you wouldn't even know I was deaf. It is a blessing because if I dont have my CI on or it breaks (it is technology) I have other means of communication so Im not restricted. I always tell parents "Why is it okay to teach hearing babies sign language but not implanted babies?" Teach that child to be bilingual and expose them to the best of both worlds.

    Honestly I am a living proof that someone who lives in both worlds can succeed regardless of disability. And I do embrace my culture and my language and the same time I embrace the technology that is provided to me that allows me an opportunity to live and thrive in the hearing world. We need more articles like this and please don't stop blogging! I really would like to see how ya'll are doing.

    T'Care

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  3. Thank you all for your feedback. My wife and I debated going private for a long time. The one reason we did not want to private was because of the blogs and stories we read from other people when we first found out about our kids. They were a big help to us, and we wanted others to benefit from our own experiences if they could. As a result, we have launched, as of today, a new blog site that will be public. Our two current blogs will still be going private so we can write in greater detail about the happenings in our lives. However, this new site will be a way for us to share our experiences with others. We hope it will be helpful. The site is http://lessonslearned-lessonslearned.blogspot.com/. Feel free to take a peek.

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  4. Jake~ What an awesome letter. Can I just tell you how much I love your kids? I am so glad that we have kids the same age who can grow up together. I think that they are so lucky to be able to be exposed to the deaf community through your kids. It was so fun to watch them play together tonight. I think that they are all becoming little buddies. So fun!

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