Archive for September, 2009

Change

September 16, 2009 · Filed under Andrew, Blind, Elijah, Family, My Boys, Parenting, PooWee, adoption, life, me, visually impaired, whining, work

I just shared my blog address with my niece. HI BROOKE!!! :)

It’s made me think of the change my blog has gone through.

Initially it started out as a blog about my boys. But, mainly about PooWee. About the most painful time of my life. A time that I think of daily. A time that I still cry about to this day. A time when no one in my real life understood me. No one knew what I was feeling. How could I still be in so much pain when I had my PooWee in my arms. I had decided to parent him. Nobody IRL understood my pain. 

But, with this blog…strangers helped me through that period in my life. Strangers reached me with their comments and especially their ((HUGS))! I am forever grateful to you all, and you know who you are! I’m not sure I would be as stable as I am now with my adoption experience if it weren’t for you guys! Honestly…I’ll NEVER forget you! 

Now, it seems to be turning into a blog about … my Elijah! (With some mentionhere and there about the rest of us.:) )It’s quit apparent there is tons to say about him. I’ll say it as I always do…I always seem to be talking about Elijah, because there is always something to say about him. I could talk forever about his accomplishments or defeats. He trucks on though, whatever is handed to him in life.

We started learning about Eli’s vision when PooWee was a few months old. It’s been about 2 1/2 years now. I still feel somewhat “dumb” when it comes to what to do for him. Who do I listen to, where do I go to ask about something. New things pop into my head everyday. Someone will suggest something else. My brain just gets so overwhelmed, I don’t know what to do.

As with all my boys, I want them to have the world. I can’t give them the world. It’s not mine to give.

I want my boys to live a healthy fulfilling life. I don’t care if they are doctors or a sales clerk. If they are happy and fulfilled with what they are doing, I’ll be happy. I want them to appreciate the small things and feel grateful for the big things.

I get sad when Andrew says I baby Eli. Honestly, I don’t think I do. He just needs more of me. He has more and different needs in life. Andrew hasn’t grasped that concept yet. Instead he remembers walking to school all by himself in 5th grade. Then looks at Eli who can’t step outside by himself, because he fears something bad will happen to him. I try to keep in mind that though Andrew is an adult, he still is a kid. He’s a fresh 18 year old that still holds on to the teen attitude. He’ll “get it” later…right?!

I think things would be different had Andrew grown up with Eli having the blindness since birth. PooWee…it’s normal to him. If Eli is taking up most of the TV or computer screen, PooWee just looks at the area Eli has left for him. (Usually Eli doesn’t even realize he’s “hogging” the screen. Once you ask him to step over, he does so with no problem.) PooWee knows Eli’s eyes aren’t good. We tell him that Eli has sick eyes. That he can’t see good. PooWee points at them and says, “OOOWWWEEE eyes.”

PooWee loves Eli’s white cane. He’s pretty good at tapping it as he walks too. But, he also knows that when Eli is using it, his hands stay off of it. He doesn’t quite realize that when Eli places a hand on his shoulder that he’s guiding him in the dark. Instead PooWee thinks he wants something and says, “What Ah-Wah?” or “No, let go!” That’ll all come in time. He’s learning as he grows. And with that learning he’s accepting Eli’s blindness.

I’m not exactly sure where I wanted this post to go or where it’s actually headed. I assume I was thinking of how life changes. Whether it’s a small change or a large change…life changes.

Not only did I give my niece my address, but like a handful of other people I know. I somewhat feel exposed now. What will they think after reading all my babble? That I truly am the fruitcake they know in real life!! :)

I think I’m longing for a huge change in my real life. I always wanted to move to warmer weather (like WAY down south) when Andrew graduated high school.

Now, I say I can’t take Eli away from his vision teacher as he has grown very fond of them. He loves them, I know he does. Which in return make me love them even more.

I’ve been pondering the idea again though. Just not WAY down there! Perhaps an hour or two from here.

I’m run down on my job. Been there nine years. I’ve disliked it for nine years. Especially haven’t been able to stand it for the past 2 1/2 years. (We won’t even go there!) I want something new! Something challenging. Like assisting in saving a life isn’t challenging enough. Ha! It’s just seems to be the same ol’ same ol’ thing. Don’t get me wrong, I know what I do is important. I’m there for the doctors and nurses so they can be in by the patient’s. It’s just that someone else can do too. It doesn’t have to be me. I want to move on.

BUT…where am I going to go? WHAT…am I going to do?

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ANYONE AND EVERYONE!!! Please critque my post! This is what I have SO FAR prepared for my talk at our Visually Impaired Family Gathering. Please leave me good and bad comments! Yes I’m begging. I totally do not want to make a fool out of myself! THANK YOU!!!

September 14, 2009 · Filed under Blind, Elijah, Family, Helping others, Just for fun, My Boys, Ranting, fustration, life, me, venting, visually impaired

Before I start, please let me add that it’s been a LOOOONG time since I’ve had to speak infront of a group of people. There will be approximately 30 people at this event and to me that’s ALOT of people to talk in front of. It’s a very relaxed atomsphere and I’m sure I’ll only be glancing at my paper now and then, but I just wanted somewhat of a format to go by.  Thanks TONS for those that put themselves through reading this!  Also, I moderate my comments, just because there have been some very stupid (to put it lightly) ones in the past. Let the “talk” begins…

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I think I may have been one of the only mothers out there that had been dreading the start of school. One because summer seemed just WAY TOO SHORT this year and totally flew by us. And two– HOMEWORK!! Homework can be a huge stressor at our house.

I have not been able to accomodate Elijah’s blindness at home. This is more devastating to me than hearing the doctor tell us that he was legally blind. We have the bear necessities to get by. He’s got magnifying glasses from 4X to 12X, lighted ones, pocket ones, even a dome one. He’s got his own desk with his special lighting. A large supply of erasable pens and bold lined paper. He’s even got 3 pairs of his “signature” sunglasses.

This summer we transformed our home into a dungeon. It was just too bright for him. We went out bought some good blinds, shades or darker curtains and now he can live inside without wearing his sunglasses. Ok here’s one area I was glad to see school start. I get to pull open the these shades and let the sunshine in during the day….well until he gets home that is.

But when it comes to some of his homework, his magnify glasses just don’t just don’t always do the trick. I find they work best with worksheets. Where what he reads and writes are on the same page. Bouncing from his math book to his paper doesn’t work so well. He looses the problem he’s on, misses pernent information like a decimal and he ends up getting very frustrated.

Reading has to be the worse. He’ll test out his different magnify glasses to see what works best with the font of the book. Then he gets upset because the magnify glass is getting all fogged up from his breathing. I try to tell him to just stop breathing, but he doesn’t find my humor in that. I would say it takes him anywhere from 5 to fifteen minutes to read one page in a book.

His school has a reading program he participates in. They need to read 15 minutes a night. It will take him well over a month just to read one book.

When the class is reading a book together and they have to do some independent reading at home. Such as reading to the end of the chapter, that could take him well over an hour at home.

Yes, I am home to help him most of the time. But, helping and doing are two different things. I can’t always sit down and read him his math problems. Read to the end of the chapter for him and help him with any other work he may have.

This year his teacher sent home a letter of what to expect in 5th grade. I found it very interesting when she wrote the criteria for homework is about 10 minutes per grade level. So, this year we are to expect 50 minutes of homework a night. He’s done 3 times that in the past.

Last winter I attended a classes held by Family Voices entitled Did you know? Now you know. How to be a parent advocate for you special needs child. The class went through everything from, daycare to IEPs to medical insurance private and Medicaid and more. I would encourage everyone to attend one of these sessions if at all possible. I learnt so much.  I am very glad I attended them. ( I did hand out the next few sessions in the Pier bulletin)

We’ve been dreaming of a CCTV for home use since the beginning of his diagnosis. He uses one at school, he loves it and definitely know the benefits of it. I was encouraged to make a claim to my private insurance and Eli’s Medicaid for a CCTV by the presenters of the Did you know Now you know sessions. I immediately had Celena HHHRIRHRIR from  ***** as my backbone for anything I needed.

So, I made my claim. Within minutes I was turned down. I asked for a reason. And stated that a CCTV can be considered a durable medical equipment and it is also known by the board of Opt….. to be a prosthetic device. Then I was asked to get a letter from his eye doctor supporting the need for one.

Eli’s eye doctor Dr. W fully supported my claim, I received a letter from him. I faxed his letter and the article I have given you written by Gregg Trapp. I found this article to be very encouraging. 

To no surprise to me the insurance company once again denied the claim. This time they gave me a reason. “A (my employer) was not making any home modifications at this time.”  As you can see in the denial letter, they listed examples of home modifications such as saunas, tanning bed and elevators. I had to laugh at how they put a CCTV under a home modification. Then again I had already shown them that it was a durable medical equipment and a prstethis device, so they had to think of something to deny me under.

Then the appeals process began. This is the part that I could not have done without Clelna.  She is a hero in my book. She started throwing different organizations at me to contact. She was talking to people everywhere she went. She had never assisted with a visually impaired situation before so she was learning as she went too.

I talked to so many different organizations it was crazy. I was even goofing up names and who was from which organization. It ends up that currently I have Disabilty Rights/WI supporting my case. Sue  is my contact person. The appeal letter was sent out this summer and we are once again waiting for my insurance companies response. Sue is preparing her case by getting school records and information from the insurance company. We anticipate Medicaid denyingus too, but haven’t gotten that far yet.

I am so astounded how insurance companies don’t recognize the blind or visually impaired. Not one item have they covered for Eli’s disability. Well, they do cover 80% of his eye exam once a year. However they didn’t cover a dime when we had an extra visit one year because we were concerned about him seeing floaters. Medicaid did pick that one up though.

I find that if we as parents can’t afford the needed items for our children we have to rely on charity. And it’s wonderful that these charities are there. Eli has been very blessed with a portable CCTV the Sense View which he just received from the Kronenwetter Lions thanks to a referral made by his Vision teacher Karen. We can’t thank them enough. But I can’t stop feeling that insurance companies should start helping the blind and visually impaired more. If I brake my ankle they’ll help cover crutches, possibly a surgery, so that I can walk again. But, they won’t help my blind child read a book.

I’ve learnt that patience is the number one necessity throughout this fight. Nothing is going to happen tomorrow. Followed by determination and support from those around you. I can’t tell you the number of times I have broken out into tears only to wake up the next day to make more phone calls and retell Eli’s story to yet another person.

I don’t know what the outcome of this will be. Our dream is to have a CCTV sitting on Eli’s desk. Last winter I said I just couldn’t go through another school year of homework. I was drained, beat up, I hated homework. But, here we are at the start of a new school year and no CCTV yet.

 

 ETA-Within a short time of posting this I had a search engine bring someone here as they searched the question -”Why doesn’t health insurance cover the blind?” Come on people lets fight this battle! They can’t keep refusing the blind!

 

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