Deafblind Children

Although this topic has been on my mind for sometime, I don’t know how parents deal with a deafblind child. I know, I know, I guess they just do. Anyone who has to face any kind of issue just does what they can. I should know.

My parents never really had to work with us being deafblind. Sure, we were hard-of-hearing. That was new for them. I remember my mother putting me on the countertop between the sinks in the bathroom so I could look in the mirror. I had to mimic her lip movements. (I must have been about 3 or 4 years old at the time.) That was my “lip service”-speech therapy. I had some hearing so it was easier for me to pick up sounds and learn to talk. In grade school, I can recall “speech class.” We practiced our vowel sounds. (Imagine my confusion in high school-I wanted to take a speech class, but I found out it wasn’t what I thought it was. It was the kind that you stand up in front of class and make presentations. Oh duh! I was glad my brother told me what it was before I enrolled in that class.)

Our (my brother and sister and myself) vision problems didn’t start till we were well into our twenties, so there really wasn’t anything for my parents to work with in that department.

But parents of deafblind children? How can they cope? What can they do? Someome came across this article. Here's more.

I get sad when I read about some parent actually abusing his/her child because of disabilities. How sad is that? Years ago children were put in institutions. There are plenty of people out there willing to adopt disabled children. I am glad to read about parents who love their disabled child and will do what they can to help their child. Here's a story about deafblind triplets.

There are programs out there that help deafblind children. They are for those between the ages of 3-21. There are schools, either traditional (mainstreamed) or residental, that can teach deafblind students.

Some parents need to be pointed to the right direction to get to the right sources to get help. Some become advocates, fighting for the child's best interests.

A Thought to Ponder...

I was thinking about my last visit with my audie (audiologist).

In a recent post, Plugged In, I mentioned how I learned that everyone's ears are constantly changing its shape, but it's not all the noticeable. The earmold may not fit after a time and it would need to be replaced. Same thing with the nose. (I didn't mention this in that post because it was a little irrelevant.) The nose changes, too.

The other day, I got to thinking about the nose and its shape-changes.

Is it worth it if some people get a nose job if the nose is going to change? How does that affect the new nose? Maybe it doesn't change. I don't know.

Just a thought.

Getting a LIfe

Lately, I have been reading so many blogs and emails. I decided to cut the amount of time I spend reading blogs everyday. I may read a few here and there and then another few the next day. Too much time has been spent keeping up with all the blogs and emails. I am just letting you, my readers know that I am still there, just not as often as before. No insult to anyone. I may post and then sign off or take turns reading blogs on alternate days. This is getting too addictive. I am sure we all feel this from time to time.

I had to add this picture below because I have two monitors next to each other like that. It's so nice to look at two different things at the same time. I still have to click on one to make it active, but it's really nice when I am doing research or looking up something. All I have to do is look back and forth.

Artifical Vision

This is the latest information about research on degenerative diseases. Read it here.

Bionic eye.

Here is on on a retinal prosthesis/implant. (I couldn't find a better site. I know it's out there.)

There are so many research ideas out there in search of a cure for degenerative eye conditions.

I think about what the hearing aid can do. It gives the hard-of-hearing (HOH) person "artifical" sound. It's not the true sound of natural sound you hear all the time. I'll take it, though. It's, as I described in an earlier post, tinny, hollow-like.

About Cochlear Implants (CI): Since I don't have a cochlear implant, I will say what others say about the CI. They hear so much better. It's clear. Most don't know why they waited so long to get a CI once they have it.

I am thinking about all the various research devices that are currently being clinically tested out there on eye diseases....if hearing aids can amplify sounds a HOH person hears (but it's not really natural), would the devices that help the eye be natural? Would it be close? Would it be artifical?

Would it be like hearing aids or CIs-better than nothing?

You Just "Do"

When I worked full-time, some women who were stay-at-home moms had asked me, "How do you do it? How do clean house and take care of the kids while working?" To which I would shrug my shoulders and reply, "I just do." I worked full-time before having my first-born. Having a baby in the house wasn't too bad. It's a little more work-extra laundry, preparing bottles, and changing diapers, or calming a crying baby. You just do. You manage. (Of course, I had an advantage: If my baby's crying started to wear me down or frustrate me, I just turned off my hearing aids. I couldn't hear the crying so then it didn't upset me.) Having a second child was just a little more work. You just adjust. We're not perfect. We make mistakes. We manage.

Now I just had someone ask me, "How do you do what you do with your limited eyesight?"

Again, I shrug my shoulders and reply, "I just do." What else can I do? I have central vision. I can still read newspapers and magazines. I still clean and do laundry as usual. (I may be bull-headed, though, about accepting "help' because I have a little too much pride-one of the seven deadly sins.) I adjust. I deal with it. Sometimes not so well. I have up and down days. I am human.

I dedicate this post to all full-time working moms and all those who have health conditions or disabilities. Together, we just do.

Fears of Growing Old

It is so interesting to compare degrees of hearing loss and vision loss from Usher Syndrome. Those of us who have siblings with Usher Syndrome may have different rates of progression or were born with varying degress of loss to begin with. It doesn't matter if a male or female sibling is worse than the other. Usher Syndrome does not work in predictable ways. In the same way, an older sibling may have better vision than a younger one or visa versa.

I still can't help but think that stress plays a big role in the outcome. If you have cancer, stress can worsen or spread the disease faster, can't it?

Stressors such as jobs, strained relationships, pregnancies (if pregnancy can affect the mother's calcuim, potassium, and magnisium, why not the protein (look at the subheading:What genes are related to Usher Syndrome? in this website). Here's more on the proteins.

A lot of things can affect those genes, even stress. And the normal aging process.

Some people have fears about growing old. More wrinkles. Gray hair. Thinner skin. Some things are not as easy to do anymore-the body's getting weaker.

I have my own fears about growing old: More progressive loss of vision (and hearing) as I grow older. I wish I could just "freeze" the progression or stay in remission from now on. When I was younger, I could hear and see so much better. Now the older I get, the more vision and hearing I lose.

Saved by the Bell

Or rather, Saved by the Whistle!

When I started dating, I found I had a built-in alarm that “protected” me from guys. I told my dad about it and he liked it that I had this “alarm.” This was better than keeping thirty-five cents (to use on a pay phone) in my pocket in case of emergency. (My dad liked to make sure we were okay.)

All my date had to do was get too close to me. If we danced, my hearing aids would whistle.

It’s not something you expect to happen when you dance with someone!! My dancing partner would jump back in surprise when that “Don’t Get to Close to My Daughter” alarm went off. (I am sure that a father invented the hearing aid for his daughter. Okay, I'll get serious.)

Anything that would get within close proximity to my ears would cause it to whistle. I could be brushing my hair near my ear or get too close to something. And off it goes.

There’s another “alarm” system in place with the hearing aids. If I got too close to the wall or a door or something, it’s like “feelers” or antennas-it would whistle, especially when the tubes that connected the ear molds to my hearing aids get too old and hard and need to be replaced. It would keep me from adding more dents to my skull. (Of course, it doesn't always work if I am moving too fast. Wham! Head meets door.)

It all has something to do with the feedback and air blockage or something that causes my hearing aid to whistle. It does get annoying. I did mention in a previous post that if the ear molds don't fit right, they will whistle.

Hmmm, I wonder if I could come up with something for my girls when they start dating? Some kind of built-in alarm that would warn the guys not to get to close? Well, a mother can dream…what about those cellphones? No need for keeping change for pay phones.

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My World

When I started this blog, I wanted to write about what it is like living with Usher Syndrome. That my perspective, frame of reference, and view would help others understand and find their own answers. I have had some viewers stumble across my blog doing a google search with keywords such as, "should I drive with RP?, " "hearing aids," "guide dog rules," "parenting deafblind," "retinitis pigmentosa," and " diagnosis of retinitis pigmentosa at 56." A recent search was "deafblind story." It reminds me of all the posts I have written about, too. Sometimes I know that my blog will not help them find that answer, such as "diagnosis of RP at 56."

I think of the various topics I have used to help show the world what we can or can't do or just things that we deal with or others deal with being "deafblind." I am happy that I can serve some purpose to educate and do some form of advocating for RP/Usher Syndrome and the deafblind. This started out as an outlet to just talk about my feelings, but it has grown into something more. It has been therapeutic to do this because I know that some people out there are looking for answers and I hope that I have helped them.

Being a student, I know the frustrations of trying to use a search engine to find relevant answers. And for my regular visitors, I always welcome them to take a peek at my world.

I want to add that if your google search puts you at the most recent post, please check the archives and then go to the edit menu and click "Find" and then use the key word again. That will highlight the word you are looking for. Hope this helps.

Plugged In

I had an appointment with my audie (audiologist).

Before I go on, I want to stress the importance of seeing an audie if you think you have a hearing problem. I do not recommend going to a hearing aid dealer/specialist (to me, they're nothing more than glorified [hearing aid] salespeople working on a commission). Audiologists have the training, the credentials, and advanced knowledge about what hearing aids are right for you. They work with you. I feel more comfortable, too. Sure, hearing aids (HAs) are not cheap. The last ones cost $1200 apiece. HAs have an average lifespan of 5-7 years. The ones I have now are about 5 years old. It gets expensive to get HAs replaced every 5-7 years, but it's worth it.

Here's some interesting facts: Just like fingerprints, every ear is different. What's more, the ear changes its shape every few years-even two years. so sometimes it's necessary to replace the earmold because they don't fit anymore. Otherwise pockets of air get in there and it whistles in your ear (very irriating!), not to mention how damaging it is to the ear.

My hearing dropped since the last time I got new HAs. I am in the process of getting new, more powerful HAs.

I had to get new earmolds for my new HAs. This is common. This was the reason for my appointment.

The audie tied up a small piece of cotton with a string and pushed one gently into each ear. Then she filled each ear canal with a thick, pliant material (think silly putty but more waxy-like). She leaves it to set for about 15 minutes. It feels cool and well, ...there. I don't chew gum that much, but I wished I had some gum to release the plugged in feeling, but then again, that could affect the molding process.

She returns and pulls them out by the sting and then checks each ear for anything that may have gotten stuck in there.

She tells me that my earmolds will be bigger than the ones I have now. This is because my new HAs are going to be more powerful. This helps to avoid the feedback or whistling problems. (I always wondered why some of the hard-of-hearing or deaf people I knew had bigger earmolds than others. I just didn't question it because I thought every audie's specification was different.)

I have a new appointment in three weeks. I will be getting new HAs!! The only downside is that the brain needs to adjust to the new HAs. So things will sound different until it adjusts to it. The sounds I hear are always hollow-like, kind of tinny or metallic. A dropped coin sounds "rattlely." It's pretty much artificial. Most of the time, it only takes about a few days to a week to retrain the brain to get used to the HAs and the sounds.

I will post an update on that once I get the new HAs.

The Switch

Today I made the plunge. As I hemmed and hawed, I asked opinions. Everytime I signed in to Blogger, it was staring at me in the face with imaginary neon lights flashing..."Switch to Blogger Beta," like a pesty reminder. The thing that held me back was that there was no going back.

So after much deliberation, I plunged into the Blogger Beta pool-head first. I also changed the template. It’s just more professional-looking. I am going to get used to it. I'll have to tread water for a wee bit to get my feet on the ground. I have my “HTML 4 for Dummies” book to guide me, the Blogger Help, and all of you bloggers and blogettes.

I didn’t want to be impulsive. I had to do some research. I know that, like any change, I will learn. I will learn to navigate “behind the scenes.”

Thanks to those of you who commented. Thank you. Cyber-hugs.

A Day In My Life

Usher Syndrome affects my life
In so many frustrating ways.
I do not wish this on anyone.
I remember better days.

Wiping tables-I knock over a “forgotten” cup.
Something easily avoided had I looked there.
I have more mess to clean up than before.
Sighing, all I can do is shrug and stare.

I would bump into someone at the store
Immediately to the person I’d apologize.
Embarrassed, I find it was just a display.
Did someone see me talking to it?, I’d agonize.

Matching a dingy yellow sock with a pale pink
Or navy with black, my colors are affected.
I can laugh over this, but inside I am crying.
With Usher, my life is becoming infected.

With the help of hearing aids, I can hear.
The phone ringing, a child crying...
But only if I am in the same room.
To understand some voices is trying.

Periodically in my eyes, the swirling lights...
One right after the other, arcs flash brightly
Circling ‘round and ‘round, then fading out,
Replaced by the next one...I shut my eyes tightly.

Gradually, my world is becoming shadowy.
My peripheral vision disappear in a void.
There’s nothingness, a thick impenetrable plastic
Obscuring what once was there, now a void.

Called tunnel vision; I can only see straight ahead.
I can sense movement in the farthest corners of my eyes.
A little at a time, it, too, will die off, ever so slowly.
What’s my purpose for this? I gaze questionly at the skies.

A brave front I show the world, trying to be normal...
Partially hearing and sighted: I have vanity issues.
I can admit I cannot hear well; I am used to it.
I try to hide my vision problem, but sanity ensues.

It is easier to let go and admit a visual problem
Than to look like you aren’t paying attention.
People are more understanding when it’s clear
That my “clumsiness” has an excuse, a reason.

It is still not easy…you take it one day at a time.
Admittedly, one day is better than another.
It fluctuates continuously, yet amazingly I adjust.
But it’s easier when we work together.


Written by Shari © 2007

Smile!

Working-Class Wisdom

Too bad that all the people who know how to run the country are busy driving taxicabs and cutting hair. –George Burns

No Smoking

A man asked a nun if she was permitted to smoke. “No,” she replied. “One habit is enough.”-Unknown

Walk Before You Talk

Before criticizing a man, you should walk a mile in his shoes. That way, when you criticize him, you’re a mile away and you’ve got his shoes. - Unknown

Behind the Scenes

I keep facing the dilemma...should I make the switch? Is it inevitable?

The new Blogger Beta. I get this with my yahoo email, too. Switch to Yahoo Beta.

I bought a "HTML 4 for Dummies" book. I thought it may answer some questions I have about the "tags" and all that extra stuff that we do in our templates. I am learning so much about the "behind the scene" computer/Web language.

I would like some feedback. I hesitate to make this switch because I can't go back if I am sorry I did it. I am not a "plunger." I want to test the water and go in gradually. Once in a while, I will just jump in and just get it over with right away. It just depends. I guess it's the fear of the unknown.

Any of you bloggers (and blogettes) sorry you made the switch? Is it a lot easier to work with? Could you share with me your thoughts on this?

Another thing is, I would have to create a Google account. I have enough user IDs and passwords, I keep getting them mixed up (because I change some of them periodically. I do have them written down and put in a safe place.

Thanks.