Sunday, May 23, 2010

Childhood hearing loss support group

A couple of weeks ago, I attended a parent forum put on by the Pennsylvania Department of Health called Investing in Family Support.  The invitation indicated that they were looking for parent's experiences and suggestions regarding the Newborn Hearing Screening Program.

This was, by far, the most interesting program I've attended.  I often feel awed by the mothers at these events.  These women have been advocating and serving on boards, some of them for more than a decade.

After a review of the Newborn Hearing Screening Program (ironic for me because Julia passed her newborn screening), the discussion moved to ways to support families of children with hearing loss.  PA is working to develop some type of formal support group.  Seven moms and a grandma had a lot of ideas about how that should work!

It was a great reminder to me of how much we need each other.  Even after getting over the initial shock and conquering a speech delay, there are new issues coming up.  It helps me to talk (or in this case write) about things as they come up.

Julia is very fortunate that we live in an area where she can go to a playgroup with two little boys that also wear hearing aids.  She might be "different" than all of the kids on our street and maybe even the only kid in her whole elementary school with magic ears, but at least she has met other children with hearing loss.  I get to talk to their moms every week. 

Many families won't often run into anyone in their same situation.  Another support system would be appreciated.  It could be like match.com for parents of deaf/hoh kids.  I would sign up.


***I have already signed up for the existing PA support group called Parent to Parent of Pennsylvania.  If you are looking for other families to talk to about physical/developmental disabilities, behavioral or mental health concerns, foster care, adoption, educational issues, or any other special need you can contact Parent to Parent through their web site or by calling (888) 727-2706.

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