Sunday, April 24, 2011

Welcome!

Please explore the tabs at the top of the page for resources and the personal experiences of myself and others that are parenting children with hearing loss.

If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at magicearkids at gmail dot com.

Parent Profile: Dr. Schorr

Today we get to meet a mom and developmental psychologist who specializes in the unique social and emotional development of children with hearing loss.

Dr. Schorr's Story

My son Moshe had severe neonatal hyperbilirubinemia (bad jaundice) that caused his hearing loss. He failed the hearing screen when he left the NICU. The neurologist who followed him made the diagnosis at 2 months. He did not react in any way to sound.


Moshe's hearing fluctuated dramatically for three years and he got hearing aids at age three. I remember taking off of work to be with him the day he got them, thinking that he would need his mother if he would have such a life-changing, life-defining thing like hearing aids! I laugh now, since he is such a regular kid, doing regular things and his hearing aids are really not the most important part of him.

My son has had a lot of challenges in school along the way. He is now in 9th grade at a rigorous high school. I think that the hardest part has been not hearing everything the kids were saying and therefore, not knowing exactly what is going on. He is still coping with this challenge and it gets harder for parents to be involved when kids get older.


My website, Hearing Families, is dedicated to parents of children with hearing loss. I use it to share experience on issues that often fall between the cracks of professional expertise - not audiology and not speech. I focus on social and emotional issues that are very important to parents raising a child with hearing loss.

My main message is high expectations and realistic situations! That means to have high expectations. Children are a product of their expectations, if we give them the message that they CAN do it, they just might! At the same time, I encourage parents to think about things from their child's perspective and keep situations realistic enough that their child can succeed. Set them up for success.


Thank you, Dr. Schorr! Social and emotional issues are a very important part of the equation. I'm glad you've provided us all with resources to conquer that type of problem.

If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at magicearkids at gmail dot com.

Hearing Loss Profile: Kym

Today's profile is a deaf adult and the parent of a son with mild hearing loss.

Kym's Story

My name is Kym and I run the blog 'Cuteness of Curiosity'.  I blog about my crafts, hearing loss, LGBT issues and my wonderful family. I live in New Jersey with my wife and our 2 teens.  Our son who is 12 1/2 has mild bilateral hearing loss.  I enjoy French movies, reading, gardening, the beach and am an avid cross stitcher and run a small shop on-line.  I work full time at a craft/art store and I love it.  Although, being deaf makes it challenging dealing with customers.  But, I love a challenge, so it certainly makes the job more interesting!
  
When I was 9 years old, I had the Mumps and a high fever which caused profound deafness in my left ear.  As a teen I started to lose my hearing in my right ear and was diagnosed with severe/moderate hearing loss in my right ear.  I refused to wear hearing aids at the time, I just didn't think they were 'cool' at that time, so my studies suffered terribly because of this.  I social bluffed my was through my young life and it got me through, as well as leaning on my friends to help me.  Now that I am older, I realize how wrong this was and I wish I would have done things differently.

For years I had been wearing two bte hearing aids from Beltone.  Now, I wear just one in my right ear.  I also use a Assisted Listening Device in certain situations, I've also used CART, a note-taker and interpreters.  In my 20's I started taking classes in ASL.  This changed my life.  Once I met other deaf and hard of hearing friends and was able to sign and use other communication techniques, without just having to smile and nod and not understand all the time.  Sign Language  has been my most affective means of communication with family/friends.  I also am not afraid to let people know I am deaf and that I may need them to accomodate me in different ways. 

My advice for parents is talk to your school, let them know if you need special educational needs, a 504 plan or an IEP.  Do what you have to do to make sure your child is accommodated, so they don't miss out on any part of their education.  See if your state has a Deaf/Hard of Hearing Organization that can come to your child's school and educate the staff on hearing loss and amplification tips.  Keep an open line of communication with your child so you know what needs may not be met and that you can help with.  Give your son/daughter lots of love, hugs and kisses and be their support system.  Depending on the hearing loss maybe they would benefit from Deaf School Education. 

And don't forget ASL it could open many wonderful doors for you and your family.


Next week, we're going to an ASL workshop. Such timely advice from Kym!

Happy Easter!

Sunday, April 17, 2011

Playing in the rain

Quite some time ago, Tim suggested we get some kind of water resistant wrapping for Julia's hearing aids. She could then have a bit more freedom around water and in light rain. She could, he thought, wear the aids in some situations that we currently deal with by taking them out.

I was opposed to the idea.

You might say that I'm overprotective of Julia's hearing aids. The thought of sending them in for repairs makes me sweat. I have this nightmare scenario replaying in my mind where Julia has to go to school without her aids. It is my personal Armageddon.

I figured we'd always just be safe and take Julia's aids out to play with squirt guns. We'd always have a raincoat or umbrella. We'd never ever let her play in the rain.

Then spring soccer happened. After four consecutive canceled practices, the team finally played on a sloppy muddy field. If that wasn't harrowing enough, the next practice was in a mild rainstorm. Julia played soccer in a waterproof windbreaker with the hood up.

On the way home from that second practice, I had to admit he was right. We need a waterproof wrapper for the hearing aids. Ear Gear is coming to the rescue. The testimonials are promising, but really I hope having protection will just chase the rain away entirely. Soccer is more fun in the sun.

Sunday, April 10, 2011

My nemesis: negative pressure

In January, Julia visited the audiologist. The appointment, as always, began with a tympanogram. The test showed negative pressure.


I'm no professional, but I've been to this particular specialist enough times to know that those humps are supposed to be over to the right hand side of the box. When they show up on the computer screen as left-side lumps, my heart sinks. We might as well just go home.

Negative pressure makes you have that stuffed up, underwater feeling. You can't hear as well. I'm annoyed by it with my normal hearing. For Julia, it's a real problem.

The audiologist told us in January that Julia should return when her ears are clear. She suggested May. Pumped full of EmergenC and having a really healthy winter, I thought perhaps we could get away with late April. I made an appointment for April 21st.

This week found Julia congested and snotty. I don't need a fancy machine to tell me her ears have negative pressure. I'll have to reschedule the next audiologist appointment.

The part that really upsets me is the length of time my nemesis, negative pressure, hangs around. The cold will be gone for six weeks before the pressure returns to normal. It makes appointment planning difficult. It makes communication more difficult.

The next appointment is set for early June. I'm hopeful there will be no new colds before then.

Sunday, April 3, 2011

The Endeavor

The winter issue of the American Society for Deaf Children's publication, The Endeavor, is now available. You might recognize the article on page 19. It originally appeared here in December of 2009.

When I started writing about Julia's hearing loss with a post about medical assistance in the summer of 2009, I thought our family had reached some kind of plateau. I finally felt that I was in a position to give advice or at least commiserate with other parents of deaf/hard of hearing children. With all of our back story told, I really thought I would run out of hearing aid stories.

No such luck.

The last visit to the audiologist showed that Julia's hearing progressed to an 80 dB loss. That was what struck me when I re-read the (Mis)Understanding Hearing Loss article. In December of 2009, it was 55 dB and I still mourned all of the things she couldn't hear.

Now I understand better, but still disagree with, those moms years ago that implied my child wasn't deaf enough to cause me any worry. 55dB does sound less impressive than 80dB. Still, there are great challenges for children with mild losses and unilateral losses. Parents of hard of hearing children shouldn't be in a deafness competition. I feel acutely aware of that as the decibels change but the day to day issues remain the same.

Looking back on all that I've written, I can see in black and white that dealing with hearing loss is a lifelong endeavor. It's not a major thing every day, but it's always on my mind. It will always be our thing. There's no danger of running out of thoughts that will make their way onto the blog.

Perhaps some of those thoughts will even make their way into The Endeavor. I do think my writing looks better in print.

More news from the ASDC
Professor Karen Munoz in the Department of Communicative Disorders at Utah State University is conducting a research study to find out more about parents experiences in getting hearing aids and when their infant or young child is diagnosed as deaf or hard of hearing.