Monday, March 28, 2011

Corbett to cut PA funding for newborn hearing screenings

Tom Corbett's budget has been making lots of news here in Pennsylvania. The big ticket items have been getting a lot of coverage. Cuts to education and Medicare aren't going over so well. Then yesterday, I found out that the proposed budget will eliminate funding for the Newborn Hearing Screening program.

I've written in passing about Pennsylvania's newborn hearing screening. Julia, born in 2005, was screened as part of the program. She passed that screening and was found to have a moderate hearing loss as a toddler. I was hopeful that rather than can the whole program, we might extend it to include another screening around age 3.

Now I'll be writing a letter just to save the part of the program that's already been worked out.

I hope my Pennsylvania readers will join me in contacting our state lawmakers. PA currently tracks and follows up with new parents after the initial screening. They are now doing important work to make sure kids with hearing loss are put into the early intervention system. 

Without state funding, the effort to identify hearing loss in infants will be a disjointed mess.

Please visit this site to send a message to the state legislature.

Sunday, March 27, 2011

Parent Profile: Mimi

This month we get to meet Mimi of Woven by Words. Mimi's son was diagnosed in 2009 with hearing loss.

Mimi's Story

My son, Doodle (7 1/2), has had various health issues from birth. Nothing outrageous or out of the ordinary, just out of the ordinary for our family. When he was born he was slightly tongue tied, medically known as Ankyloglossia. His doctor had no concerns about it and Doodle had no issues nursing. When he was 1 1/2 we found out he had an umbilical hernia. I think he was about 3 when he had surgery for the hernia and while he was under they fixed his tongue tie.

A couple of years later Doodle had numerous strep throats and it was decided by our ENT that he needed to have his tonsils and adnoids taken out. The recovery from the surgery took a bit longer than we expected, in that he was very nasally. He talked through his nose for about 3-4 months and it gradually went away.

In 2009 he failed his hearing test at school. He was sent to the ENT who set us up with the audiologist. She was spectacular, the audiologist. Doodle just thought she was awesome. We did a few different testings and they determinded he had hearing loss in his left ear. Not enough to make the matter urgent and she left the decision up to me as to whether we should get him a hearing aid.

I decided we should go for it because I want my kids to have every opportunity to succeed and if he was going to miss something at school because he couldn't hear, that wasn't acceptable to me. We went to the manufacturer's website so he could choose the color of hearing aid and he went with the hair color he has, which is blonde. He has a Latitude 8 Mode II from Unitron. I wish they would have some cool designs for the hearing aids so the kids could be "cool" with them.

I wasn't sure how Doodle would do with the hearing aid, but I wasn't too concerned. He's pretty self-confident, but you never know how a child will react to possibly being seen as "different". I didn't want to make him self conscious in a negative way about it so I made sure to tell people to tell him how "rockin'" his hearing aid is, to use the word "cool", etc. I wanted to build him up and help him feel comfortable with wearing it. Let me just say, we have some great people in our lives!

Doodle thought it would be so cool to have a hearing aid because in the movie Up the old man was able to turn his hearing aid off and not have to listen to anyone around him. It was tough to break it to him that his hearing aid wasn't coming with an "off" button. Let's just say, he was bummed.

He's still adjusting to the comprehension that he will always have a hearing aid. A couple months after he had it he wanted to "test" himself to see if he'd gotten all better. He took his hesaring aid out and ran into another room asking me to talk so he could hear me. I was talking and he couldn't hear me. I felt sad for him, because I didn't realize he didn't understand that this was a "forever" thing.

School is going great. He has been a great student and I'm sure the hearing aid will only benefit him as he grows up. He hasn't needed any classroom help or assistance. He sits in the back of the room because the hearing aid is doing his job, which allows him to do his...be a studious student!

The only thing I have to say to other parents is, this doesn't have to be seen as negative. We all have "something" in our lives. Sure, my son hasn't lost complete hearing so it's not the same as someone who has profound hearing loss. Would I feel sorry for my son? Absolutely, but it's not the end of the world. They have to adjust and we have to adjust. It's so imperative for us to have a positive outlook so that our kids pick up on it. I also say we're our kids biggest advocate! I called the school as soon as I found out Doodle would be getting a hearing aid. The school counselor was willing to go into the classroom and talk about hearing loss or about bullying in general (not focusing on my son in that regard). The principal was willing to help out with any help we might need with this transition.

If you don't understand something, need more information, or have any concerns, ask questions! Go see the ENT or audiologist...again. This is your child's health and you are in charge of it. Do you feel like you need a second opinion or your child might need some different testing? Then I say go for it. There's nothing wrong with a second opinion. Do research. Get in touch with hearing aid companies. Try to connect with people who have gone through something similar. Remember, you aren't alone in this journey.

Thank you so much for highlighting our experience in this journey of hearing loss! You can find me at Woven by Words.




We are our child's biggest advocate. Thanks so much for sharing your story, Mimi!

Sunday, March 13, 2011

What?

Julia has developed a "what" reflex. Whether or not she hears, even if she understands, she asks "what?"

"Julia, please clear the table. Dinner is almost ready."
"What?"

Silence.

"You want me to clean up for dinner?"
"Yes," I reply, attempting to conceal a deep sigh. Each "what" drains a little more of my life force away.

I've asked her to clarify whether she's heard me. I told her I need something more than "what." I'd love to know if there's something going on that needs to be reported to the audiologist.

"Can you repeat that?" "Excuse me, I didn't hear you." Or just answering a question/following directions. All of these would be wonderful options. My latest attempt at ridding our house of useless reflex responses is to say nothing when she makes that infernal query.

Still, every day it's "what, what, WHAT?"

At least she doesn't say, "huh?"


***A while back I started a Parent Forum here at BTaC. If you have experience with hearing loss (parenting, personal or professional experience), please hop over and exchange some ideas. I'd love to know how other people figure out if their child is not hearing or not paying attention or just demonstrating a bad habit.***

Sunday, March 6, 2011

Perusing a different kind of catalog

Almost three years ago, Tim and I chose flesh colored hearing aids and clear ear molds for our newly diagnosed daughter. I wanted the aids to blend in to her golden brown hair. As if not seeing them would make the hearing loss disappear.

It was really hard to see her hearing aids. I tried taking pictures of her on the first day as she danced and signed "loud." You can't really tell she's wearing them in the pictures. I had to walk up to her and lift her hair to make sure she was still wearing them. There was no chance of slyly figuring out from across the room if my preschooler had tossed the expensive equipment to the dog.

Over time, we got more daring. There were slightly pink ear molds then pink with sparkles. Then Julia started choosing on her own.

Julia loves getting new molds. She got purple, hot pink and white tie dyed looking ones a while back. Most recently she chose rainbow stripes.

The audiologist has colorful brochures with lots of crazy color combinations. These color choices aren't enough. Julia knows now, as a big kindergartener, that other kids have fancy hearing aids as well. A person can have animal prints or bright metallic colors. I pulled up Phonak's web site one day so she could page through the options.

Julia will get new hearing aids in about two years. She's all about advanced planning.

Hearing loss has brought us a lot of new catalogs to consider. I can thank the school audiologist for suggesting an alarm clock that shakes the bed. On any given day Julia might be perusing the American Girl catalog* or another filled with ear gear and tube riders.

There's a lot of stuff to make hearing aids an expression of a little girl's personality. I think some kids are even jealous of those rainbow ear molds. Wait till they see the cool alarm clock.

*American Girl dolls can now get hearing aids too!!! From americangirl.com/hearingaid
There's now one more way to personalize your 18" My American Girl® doll: hearing aids. When you admit your doll to the Doll Hospital, our experts will perform a permanent piercing behind her ear to ensure the hearing aid is expertly fitted—in one or both ears. For more details or to order a My American Girl doll with a hearing aid, call 800-845-0005.
The hearing aids, which are removable, cost $14 and are also available for My American Girl® dolls at time of purchase and at retail locations.