Moi blogs:At the crux of the issue is: what exactly is DeafRead supposed to be?
The response may be perceived as a direct correlation to the following question:
What exactly is the DEAF Community supposed to be?
Note to the Editors of deafread.com who posted this on my comments:
J.J. Puorro (a DR Human Editor) said...
A few quick comments:
1.) It is a shame that Paula decided to leave DR. It was her decision however.
2.) If your posts are ending up in extra, please review the DR guidelines. It has nothing to do with the human editors disliking CI posts. It has to do with the post not meeting the guidelines. If you see a conflict where you did not violate the guidelines and the post is still in Extra, E-mail us for an explanation.
3.) We have something in the works and hope to announce it shortly. Sit tight everyone...
4.) I will not be commenting further here, any questions just E-mail me using the DR "contact us" page.
Moi addresses a fundamental issue in all of this:
As in our homes in the real world, we are selective about whom we allow in our homes and even more selective about whom gets to see the entire house. Only people that we feel close to and comfortable with usually get to see our back rooms, the upstairs, our bedrooms, and so on. Friends and acquaintances can get as far as our porches, our living rooms, our kitchens, and maybe more, depending on the situation and on our level of openness. We don’t allow people in our homes who do the following: treat us or our people with disrespect, diss our values, dishonor us in any way, insult us, et cetera. We definitely allow people who are different from us and who have different opinions from us, as long as they’re friendly and respectful. The DeafRead main page, to me, is analogous to the back rooms, while the Extra page is for everybody and anybody.
...just do some serious soul-searching about the future of the DEAF community before you opt for segregation of the "successful cochlear implant stories" of fellow deaf community members who are knocking on your door.
Christina dropped another bomb of a post on her blog , made me cry (I'm sensitive like that):
Looking back on our 1st Year of Parenthood, but more specifically, our 1st Year as Parents to a Deaf Child, I really could've used a "Do's and Don't" list . So, in an effort to help the Mommy's and Daddy's who may be going through, I figured I would make my own. Now, I know every family is different. And we all have different strategies...so, take my advice for what it is....advice. And always, always, do what is best for YOUR family.
Here it goes:
Do ask questions if your baby fails all or part of the Newborn Hearing Screen.
When will they repeat the test? Who was it done by? Can I get a second opinion? And most importantly, WHAT DOES THIS MEAN?
Don't let the Newborn Hearing Screen folks sugarcoat the results .
This was our biggest mistake, THAT I STILL REGRET. Since Christian was a C-Section baby, they claimed that his failed test "Was completely normal...he probably just has fluid in his ears". I believed them. I took that hope home, and didn't do the research. We went back two weeks later to find that he failed again...with no fluid in his ears.
Do trust your gut feelings .
Regardless if you are a 1st time parent, or a vetran, you have to trust your instincts. You know your baby better than anyone. We had the TOP ENTs in our area tell us our kid could hear fine after doing some pitchfork tests. I KNEW ALL ALONG that my kid couldn't hear the sound. He was just responding to the MOVEMENTS of the doctor's arms.
Don't feel guilty about shopping around for the best doctors for your kid.
There's no time, or room for worrying about hurting a doctor's feelings. Do what is best for your kid.
Do get the right tests for your baby .
Request and ABR for more clarification if you have to. Have an actual audiologist do it, not just a tech. Be prepared to ask questions.
Don't bang pots and pans next to your 3 week old's bassinet . *repeat offender*
Trust me. It does NOTHING but make you worry more. You CAN'T change that they can't hear.
Do prepare yourself for long lagtimes between visits, tests, and results.
It happens. No matter where you live. Just be patient. With that being said, take Marielle's Mom's advice too: You also have to fight, fight, fight to get appointments. Be the mom they fear! Call around until you find somone who can see you within a reasonable time.
The secretary at Hopkins and I got to know eachother very well when I called EVERYDAY for Month for Christian!
Do Your Research, and Keep an Open Mind.
Learn about your child's degree of loss. Where do they fall on the Speech Banana? Learn what the Speech Banana is. Research communication options, and don't RULE ANYTHING OUT. I remember feeling how there was NO WAY that my son would use American Sign Language. He was going to speak, and I believed that ASL was NOT going to help him. I'm glad that my husband and I opened our minds and hearts to all of the communication options available. For our family, we chose to use ASL along with spoken English. It works for us. Research what will work for YOUR family.
Don't OVER RESEARCH . *guilty of this as well*
Googling and WebMding "Profound Hearing Loss" everyday, all day won't help. Watching YouTube videos 3 hours straight about kids with Cochlear Implants wont' either. All you'll do is burn yourself out. Take a Break. I enventually did, only after I lost about a week's worth of sleep.
Do make sure you have your county's Early Intervention team in place...EARLY!
It was a very long road to Christian's diagnosis and amplification, and we really didn't get EI involved as soon as I would've liked. The moment you suspect something isn't quite right, CALL THEM.
Don't let your child's hearing loss DEFINE THEM and YOUR FAMILY . *this one's a beauty!*
It took me a long time to stop the never ending chorus of "I have a Deaf Baby. I have a Deaf Baby. I have a Deaf Baby" in my head. For a period of time, I let Christian's hearing loss define him, and I REGRET THAT TOO! It took a good friend to smack me to my senses and help me realize there was so much more to my little man. Sure, he couldn't hear quite as well as us, but other than that he was fine. You'll end up missing the little things, like laughs, giggles, and cuddles.
Do make time for your spouse. *not easy*
When we actually heard the words "Your Son Is Profoundly Deaf", it rocked my world, and it definitely rocked my marriage. Having a new baby already shakes up your world, then couple that with a kid who may have some special needs....wow, it was rough. It's so hard to not take every waking moment to talk about the baby and how he can't hear, what we're going to do about him not hearing, why he's not hearing, etc. My husband and I FELL INTO THAT TRAP. Take a step back. Remind yourselves why you had your beautiful baby to begin with. Take time for eachother. You need eachother now more than ever.
Don't Blame Yourself
I'm a hearing Mommy to a Deaf Baby. I blamed myself everyday for his hearing loss. I tore myself apart thinking that something that I DID caused this. It broke my heart. Then, one day...it clicked. After a serious amount of prayer, I accepted that Christian's loss was completely out of my control. I did everything right during the pregnancy. It just so happens that we carry a gene that just happened to be passed down to our kid. The sleep you lose blaming yourself isn't worth it. Save your energy for your baby.
Finally, DO FIND SUPPORT! *Pediatric Cochlear Implant Circle...sometimes deafread.com*
My husband and I are so lucky to have an amazing family, and a very close group of friends who have been there for us throughout our entire journey. Through their prayers and support, we have been able to stay positive and focus on our family. Let your family and friends know what you need from them. THEY WANT TO HELP.
I found an amazing group of parents at the Listen-Up website who have been such an invaluable resource. We share stories, advice, and most importantly, we support eachother. I STRONGLY urge parents of babies who have been diagnosed with a hearing loss to stop by and visit. It helped us out SO much.
By no means am I an expert when it comes to dealing with Hearing Loss. I certainly have moments everyday where I wonder "Is this right? Am I doing what is right for Christian"? This entire year has been such a learning experience for me. I test my own limits, and patience, just as any other Mom does with young children. I still worry everyday. I learned this year to keep an open mind and an open heart. Most importantly, I learned to let go of the guilt, the fear, and the anger. I learned to enjoy my sweet, silly, and absolutely PERFECT little boy for the child that he is.