Support Groups for People with Hearing Loss – Why You Need It, How to Find It – Paula’s Pearls Syndicated Article
August 14, 2009 – 11:51 pm | 9 Comments

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Home » Advocacy for Deaf and Hard of Hearing, Blogs, Current Articles, Parenting, kids with hearing loss, newborn hearing screening

If You Give a Mom of a Deaf Child a Cookie…

Submitted by Paula Rosenthal on March 30, 2009 – 12:35 am2 Comments

istock_000002775214xsmallI blog quite a bit about my good friend, Jodi, who writes one of the most captivating blogs on hearing loss over at An American Mom in Tuscany. Jodi is a mom and advocate extraordinaire, not just for her deaf son, Jordan, but for families all over Italy and now, the entire world! One of her latest endeavors was to help teach pediatricians on how to deal with hearing loss by having pediatric courses offered on newborn hearing screening and deafness for the Tuscany region. True to Jodi’s “don’t take no for an answer” style, mission accomplished! Read her post on the subject here. She makes me so proud to be her friend.

While it may seem like Jodi would rest on her laurels for a bit, this insatiable woman has yet another huge project aimed to help deaf and hard of hearing children worldwide. She is part of GPOD, the Global Coalition of Parents of Deaf and Hard of Hearing Children, a group formed at the Newborn Hearing Screening International Conference of 2008. Their goal is to improve systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf child throughout the world. Help them by taking a ten minute survey online here.

Find out more about this new organization, the survey and what people are saying in Jodi’s post here. If you do nothing else online today, fill out the survey so that this:

Why didn’t ANYONE…ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn’t all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn’t take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN’T ANYONE HELP MY SON?

...doesn’t happen to another mother.

Those were Jodi’s own words, powerful and poignant, just like her. Again, the survey is online here.

Let me know what you think of the survey and Jodi in the Comments section below.

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2 Comments »

  • DHH teacher says:

    Here in California, all newborns are screened and then followed up if there is any hearing loss. Our glitch in kids getting amplification seems more in the funding realm. It sometimes takes months for parents to get funding through CCS for hearing aids. Very often, parents don’t follow through even if they do have funding. Child Protective Services does not seem to think this is neglect, even if children are in language learning age or in public school and have moderate hearing loss! Functional families follow though; dysfunctional often do not and have to be educated, prodded, accompanied, and still the child’s needs aren’t being well met.
    Thanks for listening………..

  • Thank you for your comments, DHH Teacher. They clearly illustrate the key role parents play in advocating for their child with hearing loss. Early diagnosis is only good if the child is properly and swiftly amplified so he/she can develop language at the appropriate time.

    There are alternative sources of funding if parents know where to look like local Lions Clubs and other organizations. Some programs for kids with hearing loss will offer the family loaner aids until their funding or purchase comes through. I know of several families who organized fundraising events for the sole purpose of purchasing needed equipment.

    Parents need to be educated in how to advocate for their child. What they should do upon diagnosis, how to find funding, how to work with school systems, navigating special education laws should all be part of a larger campaign of advocacy and awareness for families of deaf and hard of hearing children. No one else will fight harder to make sure their child gets what he or she needs to succeed.

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