Archive for Blind

From Bad to Better

October 28, 2009 · Filed under Blind, Elijah, life, me, visually impaired

Some weight lifted off of my shoulders after the meeting on Mon. concerning Elijah at school. It turned out to be a rather informative meeting.

I still don’t understand why they call it a Function Behavior Assessment (FBA). Then to add to that all the information a person finds on my state’s Department of Public Instruction on a FBA gives examples such as uncontrollable acting out in class. Which does not match Elijah at all.

I did go in to the meeting with a negative attitude. Left with a more positive one. I expressed this to everyone present. They too agree that the description of a FBA should be change. Our case being a good  example.

In the end, things are going to be changing. 

Here, his classroom teacher is doing what she feels she needs to do to better his education.  She tells him to get his monocular, to use his SenseView, or to move to the front, because she thought this was best. However, she now realizes that at times it may be more of a distraction to him to use these things than verses to just listen. Elijah has already “figured” figured this out and has chosen the best way for him to learn.

She had a moment of clarity when she mentioned that for Social Studies she does all the reading outloud to the class. She then stated that Eli participates in Social Studies more than any other subject. And here for all the other subjects she “making” him use his technology when he may be better off without it.

The Art teacher will be spoken to about the comments she has made to Elijah. His vision and the best way to educate him will be told to her and the Science teacher as well. When a teacher does a demonstration in front of the class, they are going to have to use more descriptive words to go with their actions. If Eli were to get close enough to see what they are doing, none of the class would see.

I had an upsetting moment and of course it was with the principal. She was talking about the 5th graders movie that they had earned. She hosts these movies and makes popcorn for them.

She was aware of Elijah’s need to be a self advocate, so she didn’t inform him that she had a smaller TV for him to watch the movie on. She stated she just let him sit where he wanted and that was that.

I then asked her, “How is he suppose to know he can ask for something when he doesn’t even know it’s an option? He’s been attending this school for 3 years and has never been able to watch what the other kids are watching.”

I got a nod and a wink from his VI teacher. :)

The principal’s actions kinda upset me. Here Eli could have watched what he had earned just like the other kids. But, it’s almost as if her little game of  “Eli advocating for himself” he was denied it.

I was happy when he told me he had already seen the movie and didn’t like it anyways.

My advocate made mentioned that Eli is an example of a good husband. In that he does what he is told and doesn’t say another word. :) (Am I raising a god one or what?) But, he does need to learn that he can tell a teacher that he feels he doesn’t need to use a certain item in a situation, if he feels he’s better off without it.

I still have my concerns with school. I’m watching keeping a close eye on the situations with BoyA and BoyB closely. Eli tells me everything so it’s not too hard.

Infact BoyA was making remarks today about being able to beat the crap out of Eli,  and his two friends. One of Eli’s friends told him there was no way he could. So BoyA said, “Monday after school I’ll prove it.” Eli’s friend took him up on the offer.

Personally, I strongly believe BoyA would be eating his words. But this fight will never happen. BoyA’s parents will be in the front of the car line and he will be straight out to them. There’s a part of me that wants to send out a warning to the teacher or principal, but do I get involved when it’s not even my kid and the odds of this actually even happening are so very, very slim. BoyA has talked so much smack in the past that ya just gotta laugh at this one too.

I also have my concerns with Eli’s academic levels. I’m still confused as to how he can score in the outstanding, or above grade level on state tests or IQ test, yet they only teach him at “basic” level. I know, I know….welcome to public schools.

Are there any volunteers who are teachers for the visually impaired, teach braille and do orientation and mobility lesson out there who would work with my Eli. I would bring him home and homeschool him in a heartbeat. He would be so free to excel and achieve way more than the education he is currently getting.

 Next step is for the classroom teacher, VI teacher and principal to sit down and talk about the future changes for Eli. Then they will meet up in a few weeks again to discuss the changes. Eli and I will attend and give our input as well. Another FBA will be held, probabl with the IEP (for next year) towards the end of this school year.

Eli’s IEP (full review) is duein June. I do have the option of having his the “IQ” tests retaken. I would like to, because I don’t feel the school supported the results. In SECOND GRADE the kid had an auditory comprehension  equivalent to 8.8 grade level! And they first figure out NOW that he does better with just listening verses fighting to get his SenseView in focus?!

Yet, should Ihave Eli pulled from class numerous of times for some test scores that aren’t taken into consideration anyways?

I’mglad this meeting has turned out the way it did. I’m looking forward to the next meeting andsee hear from Eli how things are going.

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I Can’t Take ANYMORE

October 10, 2009 · Filed under Andrew, Blind, Elijah, Family, My Boys, Parenting, PooWee, Ranting, fustration, life, me, venting, visually impaired, whining

I’m stressed out! Like so stressed all I want to do is cry, yet I’m too angry to cry or the tears just won’t come, or I don’t have time to cry.

At work on Friday, it was time for lunch…I realized I hadn’t eaten since Wednesday evening. Thursday was so full of events and drama, I fed the kids and never fed myself.

Andrew and his father got into “it” big time and his father pretty much kicked him out. I’m actually surprised he managed to hang out there as long as he did. He is staying with friends right now and is looking for his own place.

He wasn’t prepared to move out, so I’ve hit the bank account to help him out. I think I bought him more groceries than I gave us at home. Perhaps he’ll make a supper or two for us. :)

PooWee is looking at PreK in December. :( I’m not overjoyed about it. As I don’t think kids need school at the age of three. I can teach him what he needs to know. I figured I’d homeschool him as I did the other two. They both turned out to be above grade level when they did enter school. Their social interactions were just fine too.

However, he’ll be too old for  the Birth to 3 program for speech therapy and will need to go to school for therapy. I don’t have all the details yet. Technically, it’s not even official. His current speech therapist said I should be getting information soon to set up the IEP process. (Oh the IEP!) I’m glad this time around I know what IEP even stands for. I know what to expect and how it “all” works. Just instead of vision, I’m dealing with speech. More to learn there though.

He’s missing his last sylable of most of his words, and missing majority of his vowel sounds. Yes, he talks backwards Polish. (No offense to the Polish! :)   ) He’ll tell you a story. His sweet lil face as serious as can be. It’s so hard to look at him and say, “Honey, I don’t know what your saying. I’m sorry!”  You can often get the jits of wht he’s saying, but I just really want to know all that he has to say.

There is a guilt within me that I passed this on to him. I pray he doesn’t go through all the teasing I did in early grade school. Actually, if he does my heart tells me he is a stronger lil guy than I was and can handle more than I did. If not watch out teasers because he’s got a mean punch in him. :)

Life with Eli has brought more than I think I can handle sometimes. It feels like everytime I turn around something new is hitting me in the face.

I’m not even sure where I begin. I’m even sort of sick of talking about everything that is racking up on us. I feel overwelmed just thinking about typing it all out.

Let’s start with school. UGH! I wish I could just pull him out and give him the education I feel he deserves. One that he will thrive in, learn at his own pace and will challenge him.

New year, new teacher, more difficulties!

For the past year Eli has been having “issues” with two particular boys at school. (We’ll call them BoyA and BoyB)

BoyA and Eli use to be friends. Then Eli told BoyA he didn’t want to be his friends because he didn’t like the way he treated him or other kids. Eli chose to hang with his current two best friends. Whom have a “bad” reputation at school. Now last year I was concerned about these new friends because of what the school and parents have all told me. And because of a a few factors that I knew of with one of the boys’ families. However I stand here (or sit really) and say I WAS WRONG! I would much rather my son be friends with these two boys verses his old friend, BoyA.

If I were to ask a teacher about BoyA and they could tell me what they thought, this is what I believe they would say.

 -”He’s the star student. Advanced in all his subjects, gets his homework completed, participates in class, and is an example to the other students. He attends leadership courses. He is involved in sports.

BoyA has a tendency to degrade the Eli. He’s better at everything and anything imaginable than the Eli, so this is what he tells him. BoyA had so much control and authority he tells Eli what postition he’s going to make his dad put Eli in for football.

BoyA likes to do physical stuff to Eli. Like bumping into him as he passed him. If Eli returns the gesture BoyA screams, “OUCH knock it off Eli.” Of course this gets the teachers attention. BoyA is sucessful at getting Eli in trouble.

BoyB is tends to be BoyA’a “tag along”, but he’s more of the physical bully. Pushing, hitting, tripping all that jazz.

Eli and his two friends DON’T TELL, that is their biggest fault. I’ve told Eli, if your not going to tell then you will be the one in trouble.

Most of the above happened last year. This year I, myself have WITNESSED much of BoyA’s “activities”. I have spoken with his father and mother only to find out that BoyA tells them a completely different story as to wait I witnessed. Of course, their child is sweet and innocent and I’m the one with the bully child.

Now I’m not saying Eli is completely innocent. Ask him, he will tell you when he does something wrong. But, I will tell you he doesn’t lie. I believe him with all my heart. Throughout these past few weeks I have questioned his truth, but then I am confirmed by others that he is being truthful.

In the last few weeks I have witnessed BoyA (at football) scream demands at Eli and his friends. I was in complete shock. I  so should have said, “Who in the hell are you to tell them what to do?” instead I turned away and his dad (assistant coach) told him to calm down. Then BoyA went over to Eli and hit him with his chest (as if to start a physical fight)as Eli was standing line and BoyA should have been on the other end of the field. Of course BoyA’s parents believe that Eli pushed him on his shoulder because that’s what he told them.

Upon leaving football BoyA was degrading Eli and his friends because they were talking about Reading Buddies. BoyA thought it was appropriate to inform them how much better he is at reading then them and how they suck. Two of us parents told them to calm down and stop. Everyone did except BoyA. BoyA continued on, but only to change the subject to how bad of a center Eli is and that he will no longer be “his” center. (BoyA of course plays quarterback. Personally, I think it’s only because Daddy is assistant coach. Actually, I should say WAS an assistant coach as he hasn’t been to any more games or practices since the time he was screaming at the kids so badly. – AH-we have a connection here, don’t we?!

Well, to continue on with the drama. BoyB decided to grab Eli’s leg as he was getting up from the floor to change positions. Eli fell forward, got up and pushed him back. Now, I’m not saying what Eli did was right, BUT I understand why he did. He is fed up with the….BULLSHIT!

Eli (and BoyB) get sent to the principals office. (I’m not aware of BoyB’s punishment or what the principal all had to say to him.) Eli had to watch a video on be a bully. The principal told him he was a “gang faultality, he should stick up for his friends, can’t continue only hang out with his two best friends, etc. I did have a lil talk with the principal. She will no longer be talking to my son without me present or atleast on the phone.

And of course principal feels Eli is “insecure with is visual impairment” and that is why he is behaving this way. So, she calls an IEP meeting.

Which is no longer an IEP, but will be a meeting to go over Eli so everyone is on the right path. Right path? – Well, you see Eli’s classroom teacher feels he’s not using his technology enough. She thinks his video magnifier should be used to view the TV when they are watching a video. (It soean’t work for that.) He is out of luck and just has to listen to the video. (But of course is expected to get as much information from it as the other students.)

She also feels he needs to start moving closer to the board when she is working on it or she is using the overhead. Eli’s response, “Why should I when I can’t see it anyways.” Very understandable. But now I ask, why does he have to “just listen” when there is technology out there that will allow him to also SEE what the other students are seeing.  He’s expected to learn the same amount they do, but with less visual intake.

So all this must of course mean there is something “up” with his behavior. So, now they are requesting a behavior assessment. Which at this point I have said NO to. Oh, they also asked for records from his therapist. Funny, how the school loves to dig deeper than they need to.

I let it all out on his vision teacher, K. (Again SORRY K!) Why is it that I have been asking and asking about his reading for nearly two years now. I also seem to get a “keep her happy” answer. But when the school says, “WWAAAA!” action is taken immediately?! At the end of last year his teacher told us he NEEDS to read atleast 15 minutes a day or he would start to fall behind. Now, someone please tell me how in two years the school could let a Gifted and Talented reader fall to “almost behind.” I am insisting on a reading evaluation, a straight answer and I don’t want to hear SHIT about his fluency. I don’t care if he reads at a 1st grade speed! I want to know how he is comprehending. And if he has fallen that much, how they are going to rectify this situation.

I will NOT sign a release for his therapy records. As our therapist stated, alot of what we talk about in therapy is NONE OF SCHOOLS BUSINESS. But, he has agreed to verbally talk to them, if they wish and I agree. He will only tell them things he feels will assist with school. But, I will be sure to remind them, THEY will pay for his time… NOT ME!

I’ve tried for over a year to get the school to recognize that Eli and his friends are not always the one’s starting trouble. That they often are the victims of bullying and degrading comments. They don’t believe their prize student (BoyA) could be doing such stuff and blow me off. Without Eli and his friends telling it’s hard. Plus the fact that they often don’t get the chance to tell their side of the story, or choose to just take the consequences verses sticking up for themselves, doesn’t make it easy for me to get the info through. Truthfully, I don’t think that the school would believe my boy anyways.

Well, I’m letting the school know. I am now becoming the tattle tail and I will become the pain in their butt until they start looking in to every and any situation I tell them about.

BoyA’s parents are good friends with (new one!) BoyC. BoyC is now accusing Eli of smashing him in the helmet with his head and hurting him , where he was crying all night long after football practice the other night. (BoyA’s mother is the one that informed me of this.) BoyC’s parents have yet to say a thing about it to me, or the coach. When I confronted Eli, he was completely clueless to what I was talking about. He didn’t do anything to BoyC. But, of course he is being blamed.

Other things these parent sare blaming Eli (and his two friends) for are…constantly fooling around during practice, making the team having to run more, hurting all their co-players, causing BoyB to quite the team because they teased him too much. (Oh yeah BoyB – his parents are friends with BoyA and BoyC too.- HHMMM another connection)

Per football coach (whom I have spoken with and they have not) Eli does NOT cause the team to run extra, he does not feel Eli would intentionally hit BoyC. He likes Eli and said that he is a very good player. He’s tuff and can stand his ground and more.

Eli is 105 pounds and short. He is the only one on the team that can consistently take down the biggest guy, who is 140 pounds and about a foot and a half taller tham Eli. You will often hear the coach telling the team that how much Eli is getting through the line. “Hey, somebody hold Eli back would ya? Don’t let Eli through, get him down this time!”

BoyA’s father use to (before his yelling got him kicked out of coaching) coach the defensive players. I never heard him say, “Wow good job Eli.” Instead it was, “Come on Eli you know how to do it!” (Gee-another connection to BoyA’s degrading remarks to my son.) 

But holy man like light and day once the main coach took over teaching defense, my E-man is a STAR! The coach is very impressed with him.

At practice you can feel the tention each and everytime Eli breaks through the offensive line and tackles BoyA to the ground before he gets the chance to even see where to throw the ball. BoyA will cry and scream at Eli, because you know…Eli did SOMETHING wrong. BoyA has cries every practice, he yells at everyone that knocks him down. 

BoyA, BoyC and two other sets of parents like to hang out and talk about Eli and his two friends. They make it very well known. I think they are worse than the kids.

 

Thursday nights practice has been haunting every since. 

Towards they end of practices the boys get to play a game the coach calls Deer and Wolves. Wolves need to tackle all the Deer to the ground.

Eli was laying low during practice this day as he hurt his back during school. (Not pertaining to his disk that was slipping. That has been stable for over a year. Which is why he was cleared to join football by his spine doctor.) The coach knew this and reminded the boys all practice to be a bit more careful with Eli because he had hit his back earlier in the day.

Back to Deer and Wolf. Again Eli was a Wolf, he wore the blue cap on his helmet,he was to tackle the other kids  who did not have a blue cap on, the Deer. Eli was towards the outside trying to find a Deer. Being dark he can’t see doo doos, but if one were to go right in front of him, he’d get them.

Out of the blue this DEER runs in and tackles Eli onthe right side, Eli flies off the ground and slams down on his back. I saw it all. I run out there, yell for the game to stop, look up at the father of the kid that hit him, (Eli laid right in front of him) and asked him for help.

He looked at me. I heard him tell his kid he wasn’t suppose to hit him so hard, and HE WALKED AWAY! Where did he walk to you ask? He walked over to BoyA’s father, BoyC’s mother and laughed with them! I overhear BoyC’s mother say VERY LOUDLY, (she wanted us to hear) “Well, atleast one of our kids didn’t get injured tonight!” Now, I also have to mention that BoyA’s father is an EMT. Yet, he didn’t move an inch towards Eli. Who by the way was screaming, his right leg was tingly and numb and he was holding his back.

One of the coaches did make it over. Eli got to his feet and limped his way to the car. I had his spinal doctor paged. Waited over an hour for his page. Without a response I took Eli to the ER. The doctor managed to look at Eli a whole two minutes, proceeded to tell me it was a muscle injury. I stressed the FACT that he had a bad disk right where the pain was. But nothing worked and he pretty much walked out on me.

I paged his spinal doctor AGAIN, I was so uncomfortable with Eli’s state and wanted his disk looked at. Spinal doctor’s reply, “What do you want me to do about it tonight. Come to the office on Tuesday.”

So, Eli is back on his crutches as he was way in the beginning (almost two years ago) with his back pain. He can’t walk very well without them without alot of pain. He’s surviving on over the counter pain medication every 6hrs. Though he could use some sooner.

He wanted to go to school on Friday against my wishes. He did well. He had to endure BoyC laughing at him and making comments to his friends. He had to hear from other firends how BoyA explained how Eli was crying when it happened.

FUROSIOUS MOTHER that I have turned into immediately emailed the teacher about these boys. The teacher forwarded the email to the principal. Who called my cell phone (even thought the teacher knew I was at work) telling me that we have a problem because BoyA wasn’t in school all day. He was at leadership. (HA-what a leader!) Clarified with Eli and BoyA returned during Math class. Called and left voice mail to principal about clarification and sternly stated I AM DONE WITH THIS BOYS ACTIONS. I will be reporting everything and if it happens during school I will expect them to investigate the situation.

I’m not playing nice anymore. Nice has gotten me no where. Now, I’m pissed and the pissed off Rhonda will not be happy until these situations come to an end.

I’ve had several conversations with the football coach who too is very concerned and distaught at what took place. He too sees the personality I see with BoyA. BoyA is smart though, I’ll give him that. He plays the good game when the teachers are around. Coach is very concerned about Eli.

My fear…that on Tues we will find out that Eli’s disk has slipped more. I think even if Eli didn’t have a bad disk, he would have been severly injured with as hard as this kid hit him. We had been told that if his disk slipped any further, he would need surgery. I feel so very sad for Eli. As he loves football, and HE’S GOOD AT IT! Plus it’s one out of how many sports that he WILL be able to continue playing for his school years with his blindness. Now, if he needs surgery on his back, will he ever play again. Will surgery be the “fix all” and he can return to playing next year? Eli also heard the parents laughing and the comments made. How could grown adults be happy that he was hit so badly? How could an EMT NOT come and help and injured child, even IF he didn’t like that child? How can someone walk away from a mother asking them to help he injured child? I can’t help but wonder if this “accident” was triggered by parents. Am I wrong to think this? I feel wrong! But, why would this kid do this when he wasn’t even suppose be a a F-ing Wolf  doing the tackling?

Why does Eli have to suffer so much? What has he ever done to have one thing after another happen to him? WHY?! And please don’t tell me God only gives us what we can handle. Or everything happens for a reason. I’m angry, I’m hurt, I’m tired and I just want this all to go away!

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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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Me…Speaking in Front of a Group of People…This Can’t Be RIGHT!!!

August 20, 2009 · Filed under Blind, Helping others, life, me, visually impaired

Wow! Two posts in one day! I can hardly believe it myself!

This one is a little more upbeat. Though it makes me a nervous wreck.

I’ve been asked to speak at our nest Outreach Visually Impaired Family Gathering on Sept 29th. UGH! I don’t do well speaking in front of others.

Our director would like me to speak about my experience in getting Eli a CCTV for at home. (Oh, it’s all still going on! Patience has been the biggest learning device I have come to find out.) She’d like me to note my resources, the process and where we are at now.

This particular gathering has got me nervous enough as I have set-up the location and am helping in planning it. So, obviously, I’m worried about the location being nice, and everything turning out GREAT. AND NOW I HAVE TO BE THE SPEAKER!!! OMG OMG OMG…..

I haven’t started…haven’t even looked over all my paperwork on the subject. I’m growing more and more nervous everyday. Yet, i’m not doing anything to prepare. I know…I’m being a MAJOR PROCRASINATOR!!!

I also have an internal drive that wants to start a petition (or whatever) to start making insurance companies help pay for assistive technology for the blind. It still astounds me how they don’t recognize the visually impaireds’ needs.

So, I have hopes that on this dull, grey, wet day I start preparing for my big “debut” on “How to obtain (or atleast TRY to!) assistive technology for our blind/visually impaired child”

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Sometimes the Rain Just Fits the Mood

August 20, 2009 · Filed under Blind, Elijah, life, visually impaired

As you guess…it’s raining here today. It’s a dull, grey, wet day here. That’s OK with me though as we’re not up to doing much today.

I emailed  Occupaws again yesterday as I had still not heard anything from after the board meeting. This was their response…

“Hello Rhonda,

I am so sorry that I haven’t gotten back to you.  We have had some staff turn
over on our board of directors and I’ve been reappointing and training people in
their new positions.

We did have our board meeting and discussed Eli’s situation.  Eli is a very
capable and smart young man.  I really enjoyed meeting with you both.  We feel
that Eli’s cane skills and his residual vision allow him to travel pretty well
at this time.  We feel Eli would make a great guide dog handler in the future. 
We would like to stay in contact with you and keep Eli’s application open.  As
Eli loses more vision, I think he would benefit more from a Children’s Visual
Companion Dog.

In the mean time, is it possible for your family to acquire a “pet” dog?  It
would be great if Eli and your family can get accustomed to caring for a dog. 
This may also help Eli’s anxieties in the house.  We occasionally have career
change dogs that are already obedience trained, and that may be a possibility
for your family.  You would need to fill out a career change application to get
your name on the list.  I would also suggest calling some local dog trainers in
your area to see if they can help find you an older puppy with some obedience
training.  Just some thoughts.

Thank you again for the opportunity to meet Eli and your family.  We are looking
forward to working with Eli in the future.  Please keep us updated on his
progress.

“Harnessing Independence Through Teamwork”

 

I totally respect their opinion. It is what it is! We actually were pretty prepared for this answer, but it still makes us sad. I’m trying to look at the positives of not having a dog.

-I don’t have to run home from work everyday at  lunch for potty break.

-I really want Eli to become more independent. He needs to get off my hip.:) And with these Visual Companion Dogs I MUST hold the leash at all times. So, really he’s not gaining that independence. But, I saw the dog as a step closer. Giving him the courage to take that step away from me. To take me out of his visual field. Eli is reaching the age where he can venture off on his own in the right situation. With this type of dog, he couldn’t, he would need me to hold the leash as he holds the harness. I just thought that it may be possible for him to let go of the harness and venture off.

-No additional money needed. No vet bills or dog food to buy.

We’re just sad. Almost everything we did this summer we talked about having the dog with us. How fun it would have been to take him to the Concerts on the Square, soccer games or craft days at the museum. Even our trips to the grocery store would have been more fun.

I know she leaves the email open ended as if there is hope for the future. But, looking at it, really I  believe we are done. The program goes to age 12. Eli turns 11 next month, leaving us only 1 year.

Plus, not to mention that I’m truly hoping his vision doesn’t get any worse for obvious reasons.

The dog has been a huge discussion at therapy. Eli’s therapist really feels one would be a great asset for him. Plan is was to get a dog if the vision dog fell through. However, I don’t believe my landlord will agree. I saw him a few weeks ago. I discussed the vision dog with him and his reply was,”One of those dogs would be OK.” Basically, telling me Yes to a vision dog…no to a “normal” dog. So, it’s a bite for any future dog for us.

I do love following their puppy raiser blogthough. I’ll continue to do so. Check it out! And if you can…donate or even become a puppy raiser! :)

This is my absolute favorite picture from their blog. So cute! So much hope! And such a gift! What a wonderful thing this organization is doing!

Yeah…it’s a dull, grey, wet day here.

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I’m Living In A Dungeon

August 6, 2009 · Filed under Blind, Elijah, Just for fun, Parenting, life, me, visually impaired

It was due time I block the sun from shining in my home. I love the sunshine and welcomed it every morning. However, poor Elijah’s eyes can not tolerate it. He’s been wearing his sunglasses in the house to prevent headaches. He shouldn’t have to deal with headaches if they can be prevented. And why should I make him wear his sunglasses in the house?

I’ve held off as long as I could. I was looking at buying a home, so why improve this one. But, honestly, I like calling my landlord up and having him fix whatever is broke. Last winter my fridge broke. One five minute phone call and three hours later I had a brand new fridge. I like that! I just don’t think I want the responsibilities. My landlord rocks, very nice and understanding guy. The girl that lives in the other apartment is great as well. So…why move?

Eli has been making his own sun blockers. Blankets were getting tossed up on the curtain rods. The rods just couldn’t take that anymore and are all bent out of shape. Not to mention how funny a dinosaur blanket looks from the outside hanging in the window.

So yesterday we ventured to the “home improvement” store and bought vertical blinds for the living room and shades for the kitchen. Me, myself and I put up the blinds. I was impressed at how easy they were. My friend, D said he would do it for me if I wanted him to. I told him if I started swearing I’d give him a call. To my surprise I didn’t have to call him. Although it would have been nice to see him. The hardest part was keeping the electric drill/screw driver away from PooWee.

I went with shades in the kitchen because there are already brackets up from some other tenant(s) in the past. So, I took full advantage of them.

The office also got a window make over. I was able to use the previous living room curtains. I folded them in half making them thicker, so they block out pretty much all the sunlight. Works well and doesn’t look bad either.

The boys’ bedroom curtain are already good, so nothing done in that room. My room allows the most sun in, but it is still quite dark. Eli can go in there without problems. So no fix needed there as well.

I’m going to miss the sun shining in my home. But it was a fix that was needed to help Eli. If I go through any withdrawals the plan is for me to goto my room and pull my curtains wide open. Eli called it my “Sunshine Time-Out”. I’m thinking I could take FULL ADVANTAGE of that! :)

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I Can Handle It!

August 1, 2009 · Filed under Blind, Elijah, Family, Just for fun, My Boys, PooWee, life, me, visually impaired

I just couldn’t handle not hearing anything from Occupaws on the Visual Companion dog for Elijah. I broke down and emailed.

I got a response within an hour. She apologized for the delay and stated that it has been difficult for the board to meet due to vacations. The board meeting is scheduled for Tues. 8-4. She did mention her concerns on PooWee’s age and my small yard, but added that the entire board would decide what was right for Elijah and the dog.

I keep having dreams that they are announcing who gets a dog. The “first” dog goes to someone else. I always know there is another dog. I’m waiting to hear who that dog is going to, but I wake up! This has happened about 6-8 times. They are different dreams, with the same “story line”. I haven’t quiet figured it out yet.

I fear I will be giving Elijah the sad news. (He did very well with the art contest turn down.)

I know the president feels I am taking on A LOT of responsibility all on my own. If it weren’t “just” me here, she may feel different. I just want to yell to her, “BRING IT ON!!! I CAN DO IT! If it benefits my child I will sacrifice myself to help him/them.” (Gee-I needed this attitude when I was pregnant with the PooMan-ah?!)

I’ve stressed over and over again to Eli the responsibility he would be taking on . He whines now about having to get up in the mornings. I’ve told him, he would have to get up even earlier to care for the dog before we left the house. He says he will. I’m sure I’ll have to be a drill sargent on somedays, but I think he wants this so badly he would do it.

Besides feeding, grooming, playing and walking, the dog also needs his obediance training daily. Perhaps I can train him/her to pick up toys and fold laundry. :)

Winter walks are my struggle. My outside adventure(s) in winter consist of walking from my car to the house or store. We would be fortunate to be able to take the dog into all public places, so heading to the mall for our daily walk is an option. (Oh, I despize the mall! I would do it though. Eli would need to be trained that we are NOT going into the game store everytime though.) I guess my life could use a change and why not start with the winter months. Heres to more walks in the winter and more layers of clothing.

Oh and PooWee would just love the dog too. He’s so cute when we do see other dogs out and about. He stops about 5 feet from the dog, squats down, looks at the owner and says “PaaAase” (Please) and does his sgning for please and gentle.

Elijah had the suggestion that we make a saddle for the dog and PooWee could just ride the dog. Hey, then there would be no worries about him running away from me.

I think the PooMan will do great. He’s your typical two year old. Wait that’s 2 1/2 already! He’s learning when and where he can venture on his own.

He does hate the shopping cart though. Oh my, this is something he hasn’t liked since he came out of his infant seat. I don’t think he’ll ever like them. I am the one in the store with the screaming kid because he doesn’t want to sit in the cart. Recently, I’ve started letting him walk. he can 1- hold my hand, 2- hold Eli’s hand, or 3 hold the cart (help push). If he lets go and wonders off, (he gets tothe count of three) he’s in the cart for the rest of the shopping trip. Which tends to end when he gets in to the cart, due to him announcing to the entire store how unhappy he is about being in there. Is there therapy for a shopping cart phobia? Shopartobia???

Let’s not forget about the doggie poo poo that would need to be cleaned up. Great thing is the dog is trained to go only when on a leash. So, they eat, you take them out, they do their thing and then you pick it up. Elijah insists he’s not “touching” it with a plastic bag. He’s all about the poopy scooper. As long as he does it. Though I’m quiet sure we won’t ALWAYS have the scooper with us. 

Food and vet bills really aren’t my worry. Heck, Andrew ate and ate and ate, I’m told the dog food is about $50/month. That’s looking good for me! I can handle the annual vet visits. Anything major, I have an awesome vet that allows me to make payments. I did well with Mooses surgery, so I’m sure they would allow me to make payments again if needed. Plus Occupaws will visit the vet and try to get a discounted rate for me seeing it is a therapy dog.

I think Elijah could use the positive encounters from friends and strangers in the stores and other places.  

Elijah can’t see his friends as he passes them in a store. He hears the voice say, “Hi Elijah”, but if he doesn’t know their voice he tends to barely lift his hand and says, “Hi” so quietly I can hardly hear him. His excuse….”Well, I don’t know who it is!” With a dog at Elijah’s side, he will encounter more and more people approaching him that (hopefully) he becomes more comfortable with talking to any “blurry blob” that says, “Hi” to him.

My positive list outways my negative list. It’s just so darn hard to wait and then to think that we may not receive one. So, my thought is….if we don’t receive one I will focus on not having to go for a walk at 8 pm in 15 below weather. (Verses no dog :(  .  )

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SAD

July 12, 2009 · Filed under Blind, Elijah, visually impaired

I can’t sleep. This has been going on since our homestudy for a visual companion dog for Elijah. Truly it’s all I think about.

How do you adoptive parents do it? And your longing for your child!!!! I just want a dog!

My heart is feeling it’s not going to happen. It’s been two weeks, we haven’t heard A THING! I even sent an email with more questions the day after. No reply. I’m too chicken to call them and say, “Hey what’s up?”

Eli’s off at the school for the blind. He comes home on Fri. I already have some sad news to tell him.

He didn’t win the American Printing House for the Blind art contest. His picture was returned the other day.

They had over 400 entries for Eli’s age group. Only 80 were picked. My E-man’s wasn’t one of them. Though it’s still the best picture in my book. I hope he will try again next year.

I so strongly think this dog would change Eli’s world. His therapist really like the idea as well. If only I had more controll and I could just buy one. YEAH RIGHT! After training and all these dogs are worth about $25000.00! YEP! $25000! But yet priceless in what they can do for a child!

Please, let this happen for my son!

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Always Something To DO

June 29, 2009 · Filed under Andrew, Blind, Elijah, Family, Just for fun, My Boys, PooWee, life, me, visually impaired

Busy, busy, busy….that is what we are! I can’t believe how much we have got going on. I haven’t had a chance to sit down at the computer for more than 20 minutes. I seem to check the emails and that’s it. Went to my Google Reader today, I don’t think I’ll ever catch up on the blogs. Some had 20+ posts! UGH!

So our lives have been filled with…

-rearranging the home. Andrew went to his dad’s for the summer. Plans on getting an apartment in August with some friends, so he has officially left the nest. :( Eli and PooWee are sharing Andrew’s old room. Eli’s room got changed into the computer room (aka: Eli’s office. Has his desk with all his vision goods in it as well.) I got my dressers back that Andrew used in his room. Living room got rearranged when the computer got taken out. Kitchen got emptied when Eli’s desk got taken out. Yes, every room was affected with this room change. Place looks GREAT! And after a month it’s still VERY CLEAN! This entire rearrangement took me a full week. I could have moved.

-Eli had his blind athletes camp. He had a GREAT time. While we were in Milwaukee for that we stayed two extra days. Went to the zoo and a childrens museum. SUPER TIME!!!

-Eli’s soccer season has started. He practicing twice a week. PooWee takes his ball and practices as well. He’s pretty darn good at dribbling that ball!

-Went to a vision conference in Green Bay. AWESOME! Oh, I so want to hold an IEP in the beginning of school. School SO NEEDS to start upgrading their technology and teaching our VI kids how to use this stuff.

-We had our home study done for the Visual Companion dog for Eli. Went well, but I down in the dumps since then. Our yard is small. That was a turn off for them. I am aware we need to go elsewhere for exercise. And they were concerned about me keep “order” of the dog and PooWee. I can not let go of the leash to chase a two year old. All understandable. I figure PooWee will need some training as well. I was never a big lover of those toddler harnesses, but perhaps one would work to make sure PooWee stays by us and the dog. One of the trainer also mentioned that the dog may be a good thing to keep PooWee by us. PooWee two…he holds your hand one minute and just as you loosen the grip and he finds his chance he dashes for that toy on the store shelf. I just really hope that if they feel it’s not an appropriate time for us to have a dog because of PooWee’s age, that Eli doesn’t hold a grudge towards him.

Check out these two article on the two boys that have a companion dog. Now any of you that know what terror Eli goes through with being alone and his nightmares, I’m sure would agree a dog could be his best friend!

First article and the second article.

I can’t keep my mind off this right now. I’m so stressed about their answer. I truly hope it won’t take too long before they get back to us.

Well, those are our major events. In between time we are swimming, going for walks, at the park…all the fun summer stuff.

No biking so far this year. My bike is broke and haven’t gotten around to fixing it. Plus, I worried about taking Eli out. I feel his vision has worsened. :( A visit to the eye doctor is due. Calling today.

PooWee sure wants to hop in his seat and go though. I’ve walked my bike with him in the seat a few times for him. That doesn’t completely satisfy him though.

Eli heads off on Sunday for his two week camp at the school for the blind. This year he has a cell phone to take with him, so I’m sure I’ll get a call everyday.

Then one day home and then it’s off to the Lion’s Camp for a week.  I sure do miss him when he’s gone!

Well, boys are waking up and it’s time to decide what we are going to do for the day.

Hope everyone is having the greatest summer like we are!

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