Guest Blogger - Wayne L Roorda

Welcome back everyone! Today we have a new Blog post from Wayne Roorda. Wayne is an active member of the deaf and cochlear implant community. He works with the Walk 4 Hearing and runs a support groups for folks with CIs. Wayne has been an excellent friend to Henry and has a wealth of information to share just by telling you a bit about himself. Here is Wayne's introduction of himself and we can look forward to hearing more from him!

My Hearing Loss Story
by Wayne L Roorda – 20 August 2016 - 1 

I was diagnosed with a hearing loss when I was in the 4th grade. That was the first time everyone had a hearing test in the public schools.
By the time I was a senior in high school my hearing loss had dropped to where I needed a hearing aid. After graduation with the assistance of Vocational Rehabilitation I got the 2nd one.
Having lived on a dairy farm with all the noisy equipment (feed grinders, tractors, etc.) and the fact that we hunted all winter long didn’t exactly help things as no one wore noise protection back then.
After moving to Arizona with my family I tried going to ASU – Arizona State University. Naturally back then, there was no accommodations for anyone with a hearing loss. As a consequence, the grades suffered to the point where I was basically kicked out of school.
My Vocational Rehabilitation counselor suggested that I go to Gallaudet. My reaction was what’s Gallaudet? This is where I first learned sign language. I graduated from Gallaudet University in May of 1972.
Keep in mind that my hearing loss continued to drop over time. It seemed like every 3 to 5 years I had another drop and needed new hearing aids.
By 1992 the loss had dropped to the point where I no longer had any useful benefit from wearing a hearing aid in the right ear.
In June 1997 I had my initial visit at Johns Hopkins Hospital to be evaluated for a cochlear implant. I fast tracked through the process and had surgery on August 13, 1997 with activation September 8/9, 1997.
In a later post I’ll be expanding upon my experiences with hearing aids and cochlear implants.

Social Media, Usher and the Big Meanie

I decided it's time I start a blog. Not that I am particularly interesting or that I have very much to share with you but because I have this amazing little person that came into my life and changed everything, my eight-year-old who is deaf blind. He has Usher Syndrome. 

So, in thinking about what I would like to blog about, I figured I should probably start with who can I go to to ask questions. So, with Facebook being what it is today, you can connect to somebody in Israel and with someone down the street. It's an amazing tool and invaluable resource when you’re dealing with something that is uncommon. 

I sat down and started writing the names of people I knew who were deaf, blind or deaf blind. I included parents of a deaf child; a blind child; folks with a blind or deaf spouse and so on. I figured I’d get maybe 10-11 names instead; I got to 46 and that's only because I stopped counting. I may have something to say in a blog after all. After all, if I don’t always have the words I am fairly certain I may know a friend or two who has a prospective that needs sharing. 

When I started our nonprofit, I was a little aimless that's for sure. Well-intentioned; but aimless. Our mission has become refined over the years but our focus has always been on independence. 

I see Henry and I see how dependent he could be on me or how dependent I could allow him to be. But, unlike my first son who is sighted and hearing, and who I doted on like a true helicopter mom, I knew I needed to change up my parenting M-O. 

My husband and I have very different parenting styles. I am the one who is feared. I am the “uh-oh-don’t-tell-her” parent. Philip, well, I equate him with the ice-cream truck turning onto your street. “Daddy’s home? Daddy’s home! Oh thank god Daddy’s home!” The kids get so amped up to see him because he embodies the most amazing of everything a human being has to offer. He has patience, loves to play, has boundless energy and rarely says no. He’s is the absolutely perfect parent for 2 boys!

I knew that if Henry was going to be independent I was going to have to be the one to make it happen. Today, Henry is fiercely independent. Mind you, I truly wanted to coddle Henry as well but I knew I was dealing with a different child. I knew I needed to buck up and give him a coat of armor 3 feet thick. His mantra became “I’m fine.”

Looking back at this list of folks that I know who are experiencing what I'm experiencing I realized I have something to say. I've created and encouraged a vibrant, eager, independent, outgoing young man when I could've curled into a ball and wished it all away. Like my 46 odd friends; I took the bull by the horn. I refused to be told no. I refused to hear he's not going to receive that service. And I refused the idea that there were certain things he cannot do. 

I have a funny story. 

Since Henry was an infant I would always sign “You're fine. You're fine.” So it became Henry's mantra he would always say he's fine. So I guess he was about four and he started learning how to ride a scooter (bad mom moment) and he fell off the scooter while rolling downhill at a pretty good clip. He scraped up his elbows and knees pretty good. My neighbor was outside at the time and she about had a heart attack and, I will admit, I did make a small herculean leap towards him but slowed my roll. 

Henry? Well he jumped up, and signed “I'm fine” emphatically. He had blood running down his shins. He had a fairly large piece of skin hanging from his elbow. His scooter was overturned and his helmet was askew.

He brushed his hands off on his pants and said “I'm fine. I'm fine.” He adjusted his helmet, got back on his scooter and went on his merry way. The funny thing here is he was not fine. He needed tending to; he was bleeding profusely. 

That, is my proudest mom moment because my deaf blind child picked himself up dusted himself off and kept right on going.

I eventually did have to tell him I needed to clean up his elbows and knees. He acquiesced begrudgingly…just as his mom taught him. 

HSN Cares $1,000 A-Day-Giveaway

Originally posted April 16, 2016

By Susan Eckerle

Accessing Independence-HHSH is so excited about the news that we have received! We have been nominated by one of our supporters to receive $1,000 from HSN Cares, the charitable arm of HSN. HSN Cares is dedicated to empowering women and helping families in times of need and they will announce us as the recipient of $1,000 on April 20th at 9:oopm EST on HSN. Please tune in to see us on national television! Please help us celebrate this occasion as we will continue on making impacts to our community! 

HSN Cares $,1000 A Day Giveaway Winner Announcements

Thanks!

All The Best Intentions

Originally posted June 15, 2015

By Kim Norton

All the Best Intentions

A lot of what we do here at Accessing Independence – Help Henry See and Hear is networking. We are constantly talking. We are e-mailing, we are posting on Facebook, we are planning our next event or getting ready for ASL class, and as you can see, trying to keep up with blogging.

My latest “networking” adventure was on the radio show “Everything Special Needs” on WNJC 1360 am Radio with Sue Shilling. I had the great opportunity to talk about Accessing Independence and what we are all about. I hope you take a listen to hear about tall the great things we are doing for our community. And whether you are a supporter of ours or a parent of a child who is deaf, blind or deaf blind we thank you for allowing us to fill a need in our community. We have a lot on our plate right now as do so many families. School is ending, graduations and dance rehearsals and summer plans are a whirlwind. Despite all of these things I could talk to you ad nauseam about the needs of the sensory-impaired child. I could tell you about the great strides Henry and Kirstyn and Jon Paul are making. But I could also tell you about the heartbroken family I met on Sunday who just learned that their child has Usher Syndrome.

The positives outweigh the negatives for sure. But the negatives just linger there. They haunt me because I remember what the words did to us, “Your son has Usher Syndrome.”

So, while it is my intention to keep up with blogging I will continue to network and prepare for our next event which is our BIG FAMILY EVENT! We are so very excited about it and I look forward to meeting old friends and making some new ones.

Enjoy every minute!

Thanks!

My College Application Essay

Originally published May 4, 2015

by Matthew Wright

My story is about a boy named Henry and how he has been such an important part of my life.  Henry is not your ordinary 6 year old boy.  He was born deaf and is gradually losing his sight as a result of a rare genetic condition known as Usher Syndrome.  Though given this grim diagnosis, he does not let this disability stop him from fully engaging in a normal life.  As his neighbor for 6 years I have enjoyed playing basketball, nerf guns and video games with him.  It is a challenge for Henry to access the world.  He has inspired me with his strength and it is my personal goal to have his courage and determination as I navigate life.

Henry calls me his best friend, but it is more than that because I love him like a little brother.  To show Henry how much I cared about him I became invested in raising awareness of Usher syndrome.  After I was named Captain of my varsity football team I approached my coach and teammates with a unique service opportunity.  The Camden Catholic High School Football Team “reeked for a week”.  We wore custom designed t-shirts of Henry as a superhero which was created by a Marvel Comics illustrator.

My high school football team, Camden Catholic and Henry. We wore our Reek Week shirts for a week to raise awareness of Usher Syndrome.

We wore the Help Henry See and Hear shirts for an entire week without washing them.  We wore these shirts everywhere including football practice, school, and out in public, taking them off only to sleep.  Our intention was to make a stink about Usher Syndrome and we did!  It was more successful than I imagined.  Our awareness campaign garnered the support of the entire student body as well as the community.

Me, Jack and Henry

We received quite a bit of media attention from the Philadelphia news stations (11/7/14 ABC News and 11/8/14 NBC High School Football Blitz).  I was proud to share with the news interviewers my special relationship with Henry.I I have been close to Henry since his birth and he has changed my life for the better.  He has given me an appreciation for the simple things in life that can be such a challenge for Henry.  I look at Henry with awe and admiration.  It is an honor to raise awareness for Usher Syndrome that has affected Henry, my neighbor, my little brother, and my best friend.

Originally posted April 23, 2015

Our Most Ambitious Project Yet

by Kim Norton

Our non-profit started out of grief. It began as a way to distract ourselves from the fact that our deaf child was now losing his vision. We could deal with the reality that Henry requires deliberate communication or he would shut himself off from the world around him. He would become depressed. Those with Usher Syndrome have a higher rate of committing suicide than most. Of course, Henry was 5 at the time we learned he was losing vision so we went to that dark place…fast.

Today, almost 3 years later we are not in a dark place. Yes, its a little grey some days but mostly its filled with smiles and joy and lots of bubbling sunlight. What happened? Well, this brings me to the title of this post. I am not one to take the easy way or the path of least resistance so I have spearheaded our summer camp scholarship. My board will tell you I really am hard to control!

I want kids with sensory-impairments outside! I want them mingling and playing with peers and getting filthy from mudpies and laser tag and finding frogs and painting refrigerator-worthy works of art. You see, once Henry was diagnosed, he didn’t want to go outside. The sun hurt his eyes. Kids came out of nowhere because he had lost peripheral vision. Xbox became his best friend.

So, I have this stack of scholarship applications sitting here and all the photos are smiling at me. They are begging me to pick them up and assign their aid and send their parents their acceptance letter. The are gnawing at me to do something.

I am doing something. I am making a difference. I am gathering some of the most amazing volunteers I have ever had the pleasure of knowing: Will, Delaney, Devon, Terri, Traci, Michelle, Faye, Susan, Betsy, Dan, Karla, Gina, Jean, Pat, so many of you joined this journey with me because you too believe the need to do something.

So here is my appeal: Help us DO SOMETHING. Get involved. Make a difference where it is is easy to retreat and hit the LIKE button and move on to the next post. Help us make a difference in a child’s life with your gift of time. You never know, you might experience the pure joy of knowing what it is like to see these kids carry on a conversation…outside.

Thanks!