OUR Reality

Our family fosters children.  I received a phone call from our foster care consultant and as I listened, my heart broke.  They needed a home for a little boy who had been severely abused.  My thoughts instantly drifted to one of the first families I called as a GBYS Parent Guide.  A similar story that led to a little girl who had lost both her hearing and vision due to the abuse she endured.  A foster mom, new to our world of hearing loss but living the harsh realities of a topic many of us often choose to ignore: Abuse and Neglect.

Hands & Voices has partnered with Harold Johnson, a researcher formerly at Michigan State University, to better understand the scope of abuse and neglect as it relates to our D/HH kids.

*Abuse and neglect is experienced by 09% of children without disabilities vs. 31% of children with disabilities (Sullivan & Knutson, 2000).

*Available research indicates that 10% of hearing boys and 25% of hearing girls experience sexual abuse vs. 54% of boys who are D/HH and 50% of girls who are D/HH report sexual abuse (Sullivan, Vernon, Scanlan, John, 1987).

I was most affected by one reason why our kids are at higher risk:

*Parental and professional lack of awareness of the increased risk and the subsequent lack of education for children regarding sexuality, personal safety and their right to say “No!” (Shelton, Bridenbaugh, Farrenkopf, & Kroeger, 2008; Sullivan, Vernon & Scanlon, 1987)

We will be taking time over the next few months to share with you OUR reality as parents of D/HH children concerning abuse and neglect and ways we hope will help shine a light on a hard and often neglected topic. 

PLEASE TAKE TIME TO READ THROUGH THE FOLLOWING:

Observe, Understand & Respond: the O.U.R. Children's Safety Project

 *Child Abuse and Neglect of Deaf and Hard of Hearing Children  By Harold A. Johnson

Another group of friends

Isn’t it strange how parents will share intimate details about their children with complete strangers at a playground simply because you are standing next to each other pushing a swing.  Even stranger yet, the advice that we take from them, whom we know nothing about nor they about us  When my son, Wyatt was 2 ½, and still not talking, I can remember a parent telling me that I should just try talking to him.  She had no idea that I was all talked out.  I talked and talked, and sang, and rhymed, and danced.  He ignored me.  I tried to entice him with the Itsy Bitsy Spider, to no avail.  He had no interest.  I looked up every verse, and memorized, “Frog Went a Courtin” just to make sure I had something to sing to him in the bathtub.  I still know the entire song by heart.  I just didn’t know that he was deaf.

When he wouldn’t babble, the pediatrician told me not to worry yet.  My mother-in-law claimed that he babbled all day at her house.  When he didn’t respond to my voice, the occupational therapist said that he heard me, but, he had a sensory disorder and didn’t know how to respond.  When I screeched out a few notes on the violin, or vacuumed the house, we bragged about what a great sleeper he was.  A wise friend at work told me that I should keep on explaining everything to him.  He really was listening to me.  Then there were at least a dozen stories about a child, usually a boy, who never said a word, and started speaking in full sentences when he turned 3.  Oh yeah, there was even a center for speech and hearing where I was told that hearing probably wasn’t an issue. The first audiologist I took him to told me he probably had some minor hearing loss, but not anything significant.

He can’t hear anything.  He is completely deaf.  It is genetic and I have reason to believe that he was probably born like that. 

Wouldn’t it have been nice to hear from a parent of a child that is deaf?

Yes, it would have.  He is now 8, making progress, and trying to catch up from 3 years of missed language and many of life’s lessons that come with it. When I try to explain to parent’s of typical hearing children some of the problems I encounter as a parent, I still tend to get a lot of bad advice, from well-meaning people, who really just have no experience, knowledge, or understanding of what I go through on a day to day basis trying to teach my child the things that they take for granted in teaching their children.

I have always had a circle of women friends.  Sorry dads, I know you are out there too, but probably just not reading this article.  As an adult I have found that I have my work friends, my neighborhood friends, my social friends, and my family friends.  I have also taken on another group of friends who are very near and dear to my heart.  My Hands & Voices friends are a blessing and sometimes the only people who understand me as a parent.  There are also those immediate connections with strangers of DHH children.  At the water park, the zoo, the rest stop on the highway, when you see a child signing or maybe wearing cochlear implants.  There is an immediate connection and understanding of one another.  I feel as if I have been chosen to part of a very elite group of parents.  I am so glad to have finally found my way here.   Thank you Hands & Voices.  I love this community, the people I work with, and each and every parent that shares their story with me asks me to share mine.  I like the common themes and threads, as well as the unique challenges that we face. 

Beth

Music to My Ears

Well, the 2014-15 school year is now in the pocket. We weathered our daughter’s high school graduation and all of the end of the year festivities for both her and our son, Riley (a rising upperclassman).  During these celebrations, we attended the end of the year orchestra concert. These concerts always kick off with the school’s Fiddlers’ group playing some folksy bluegrass and Celtic selections. As the show opened, I was watching one of Riley’s best friends walk in playing a solo to the left.  My husband kept nudging me, “pay attention”, and as I pan to the right…in walks Riley playing a lovely solo, leading in the rest of the group (video at the end). This is Riley’s 5^th year playing violin, first chair, no less. Oh, did I mention, Riley was born profoundly deaf in both ears.

So, flash back 15 ½ years, when we received confirmation of Riley’s hearing loss. For me, the memories of holding him close, singing and telling him about the world, that he didn’t hear, haunted me. My (unfounded) fears of the future…would my Dad learn to communicate with his grandson or learn sign language; or will someone love him enough to spend the rest of their life with him, kept me awake at night.  For Matt, my husband, it was months later when we were driving down the road and he looked over at me with tears, the realization had hit him that the mixtape (yes, we are that old) he spent tireless hours creating for Riley's musical intro to the world…was never heard.

Music is an important part of who we are as a family. We are fans, we are musicians, and it narrates the story of our life.  How were we going to share this with Riley? How were we going to explain to Molly why Riley isn’t “listening” to her sing and read to him? How were we going to encourage our large social network of friends and family to communicate with Riley, to include him?  The child we were expecting came into the world in a whole new unexpected way.

We got involved in early intervention, therapy, and toddler groups, learned about language, learned about technology.  My eyes were opened the day our early interventionist, now a dear friend, asked me if I was talking to Riley, singing to Riley, reading to Riley?  My answer, well, not really…he can’t hear me. Mind you, Riley wasn't our first child, I was raised by generations of educators, I knew to read, sing and talk to babies. It’s all about language, language, language, however, Riley came to me with a different set of instructions…so I thought.  We now saw things in a different light, let’s get language into him, let’s engage him in EVERYTHING.  On a positive note, I could sing at the top of my lungs without Riley crying (some do, honestly), he just saw my joy. As a family, we made the choice to pursue technology and commit to the hard work that comes with that choice, and no guarantees. We also chose to be hopeful… safety, improved auditory perception… enjoying music? Well, that would be the cherry on top.

We kept reading, we kept singing, we kept talking. I guess I should have been flattered when one of our speech therapists told me it was great that I was SO loud and talked SO much…not sure everyone in my life would agree. 

We weathered the ups and downs, the successes and the defeats, the what ifs and why nots.  So, you see, this concert was a long time coming. His 16^th birthday hits mid-July…he’s excited to get his driver’s license and asked for tickets to go see his favorite band, Imagine Dragons, with his friends (okay, he has also discovered his own taste in music, we tried).  The cherry on top… he now attends music festivals with us and entertains us at night, lip-syncing songs from the 80s, while we prepare dinner.

This is our story and having shared it, I also want to say that I have seen the same zest for music and dance at concerts and in music videos which are interpreted in sign language.

Jazz Fest 2013...couldn't keep my eyes off of Holly Maniatty, on the right, look her up, she's famous.

Have you seen the DJs and dancers out there who are Deaf and Hard of Hearing, too…you should! So, what does this all mean, it means find what feeds passion in your family and share that with your child. It means help your child explore what his or her passions may be and just leave out, “well, he can’t because he can’t hear”…throw it out, ignore it and explore it.   

As I am writing this, Riley asked me what happened to the mixtape ...you know what, I don't know. Who has a tape player these days anyway, we will just make some new music together. 

Here is the referenced Fiddlers' performance, if interested. Listen for the, "Pay attention." at :31.