Sunday, October 5, 2008


For so many years when interacting with medical professionals, I considered myself "just" a Mom, humbled by their expertise and ability.
*I have since redefined myself*

I have been working on a project with my two favorite health professionals, my pediatrician and my cochlear implant surgeon. The project involves distributing a questionnaire based on the study:Primary Care Physicians' Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening Mary Pat Moeller, PhD, Karl R. White, PhD and Lenore Shisler, MS. (Thank you to Karl White who generously granted us permission to adapt their questionnaire) I have been coordinating, convincing, placating, kissing ass and yes, even begging to ensure that this project comes to fruition. See, Italian pediatricians are lacking resources necessary to provide important information to parents of newly diagnosed deaf babies. The goal of the questionnaire would be to identify problematic areas to then provide the necessary information.

As I mentioned before in another post, my ci surgeon recently published guidelines for Newborn Hearing Screening in Tuscany based on the Year 2007 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs which is perfect timing for me to insert my little self right in the debate.
Included within the Position Statement is the following:
“The EHDI system should be family centered with infant and family rights and privacy guaranteed through informed choice, shared decision-making, and parental consent in accordance with state and federal guidelines. Families should have access to information about all intervention and treatment options and counseling regarding hearing loss.”
And, in the meantime, based on this Position Statement...

The group formerly known as ICOP has become GPOD: Global Parent Coalition of Children who are Deaf or Hard of Hearing, and we are currently putting the finishing touches on a proposal for Ferdi for the Newborn Hearing Screening Conference 2010 with the following mission statement:

The GPOD provides communication-unbiased parent perspective and guidance to early identification and intervention systems, educational systems, and support services for families with children who are deaf or hard of hearing. GPOD is an international collaboration of parent groups dedicated to promoting improved systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf child throughout the world.

Note: this group is formed of "just" parents, as well. *smile*

Working with health professionals is an extremely political process, and I am slowly learning. *FTS* There is nothing "slow" about me. I will say this, in this cut-throat political situation, I will assert myself....because

Just like Tammy is a MOM:

WOW! I'm a little taken aback, as Aiden's mom, right now. Let me first say, thank you to everyone for sharing their opinion - isn't it great to live in a democracy where this is allowed? Where freedom of choice is allowed? I try very hard to not place judgement, it's not my job.

Anon. - I think it's wonderful you don't have cochlear implants, if that's what you've chosen! I respect that decision and would love to hear your stories on what it's like to be Deaf. I can only imagine and would love to walk in Aiden's shoes EVERYDAY, just to KNOW, just to have some clue. I can never take away Aiden's deafness, he is who he is, and I wouldn't change him for the life of me. But I do have the opportunity to provide my baby to hear, and as his parents, it's what we choose to do; he can't make this choice, he's six months old!

I provide my daughter glasses to help her see and my son medication to help him breathe. I am so very thankful for the great minds who invented such wonderful technologies to help us along in the world today! You are right, Aiden does not have that choice RIGHT NOW whether he gets a CI or not, but neither does my daughter to wear glasses. It is my right, as his parent, to choose this for him. Aiden can choose once he's older, to not wear his CI. But think of the opposite. Think of me not providing him that choice for later on in life. Think of him being mad at me for letting that opportune time pass for him not to have the chance to learn to hear and speak. At least the day will come where he does have a choice.

Jen - You are so right - I am one lucky person to have such a beautiful and HEALTHY little boy. I've said that myself, since day one. Especially after we confirmed him being deaf. In fact, I always felt guilty grieving for his hearing loss, which, grieving for this, by the way, is very natural. Aiden has two hearing parents with no experience WHAT-SO-EVER to the Deaf world. How could we not be upset?! We were terrified when we found out about Aiden's deafness. Who isn't scared of the unknown? I never looked at it as a TRAGEDY though, never thought my world was crumbling down.

Hell, what you don't know is I had just buried my 55 yr old father 3 mths earlier after taking care of him for 2 years with dementia ... so for you to say I take things for granted?!?! You don't know me or my life, or what I've been through, so this struck me hard, very hard. I had a healthy beautiful boy with a lot of spunk, and no matter what, I felt blessed! Did I pray for a miracle -you bet. I prayed everyday that he could hear, that the dr's were wrong. But when they weren't, we were ready. I read and I researched and I still learn something new about the deaf world everyday! In fact, 6mths later, I am helping other families with this.

I am starting a support group, to let other moms know, IT'S OKAY, everything is going to be okay, no matter what route you take! I take nothing in my life for granted. NOTHING! I live day by day and thank God EVERYDAY for all that I have!!Val, Jodi & Naomi, Thank you for your continued support. It is mom's like you who have helped me in a way I hope to help others one day.

Abbie - ( BTW, Abbie is requesting assistance, click her name to see why!) You are right ... Ryan is your typical male, at 12! I have to say though, as much as he tries not to be, he's still such a mama's boy and I eat it up every chance I get!!!

You Go, Girl!


Dianrez said...

You go, mom! Doctors like to be treated as experts, so it pays to be humble around them...but the TRUTH is when a parent becomes well-read and critical of the literature in a medical topic, she is often better informed than the doctor especially when the readings extend beyond mere medical treatment.

The average time spent on hearing/rehabilitation issues by the average medical student is less than two hours, according to one study. Even less time is spent on options in education and communication and may be based solely on flyers sent out by vested interests.

Parents, you're awesome! An education is dangerous, though, and could get you dropped by the "experts" in the field. Be circumspect, ask questions, and make choices appropriate for your child, not the doctor's practice. If the doctor is a teamworker, he will be happy to collaborate.

Anonymous said...


I deeply apologize for what I said in the previous message about not taking anything for granted. Please accept my apology.

Aiden is a very beautiful baby... he's the luckiest boy in the world to have you as his mother because of your incredible support and love for Aiden!! :-)

- Jen

tammy said...

Jodi - you never cease to amaze me ... or make me smile. Girl, you EMPOWER ME! WE AS PARENTS CAN MAKE A DIFFERENCE!!! You already are and I so look up to you for it! I hope I can do half as much as you have done. You are amazing! YOU GO GIRL!

Jen - Apology accepted. Thank you.

Anonymous said...

AAAAH! So, they decided on the name of the organization that we thought of? How cool!

Keep us posted on how it goes! Did you get my e-mail?

Unknown said...

I have sincerely been dealing with so much shit and have been spending so much less time with the support groups, that your letter to Anon and Jen, reminded me of the whole reason I started getting involved in this stuff. So, thank you, really.

Jen, that was really sweet.

Dianrez, Thank you as always for your insightful comment.

Rachel, I never gave the idea to them, because well u know why...*smile* someone else came up with the same thing...meant to be. Can you send the email again - I remember receiving something from you but it is gone. I know, I'm a lost cause...hugs...still miss ya! Jodi

Anonymous said...

Jodi, you go girl. I have no doubt that you're gonna turn things around in Italy and make sure that every parent is supported on their journey.

I've got a new social networking thing going for parents-- come and join us:

Good for you for recognizing the power behind being a mom. :)

Unknown said...

Karen...I'm working on it...thank you as always for your support. We must hang:) Jodi