Archive for venting

Dilemma(s)

October 29, 2009 · Filed under Andrew, Elijah, Family, G-ma Marcy, My Boys, PooWee, Ranting, fustration, life, me, venting, whining, work

What’s my dilemma? Work! Work-smork-bork!

I’ve got to figure out what I’m going to do with my work schedule and soon.

Here’s the deal, my sitter has quite babysitting on Sundays. Andrew has been watching them every other Sunday and my mom the other. PooWee’s dad gets him every other Sunday afternoon until I get done with work. This is usually the Sunday Grandma has the boys.

Grandma is headed to Arizona for about 2 months in a few weeks. Andrew works the Sunday that he doesn’t get the boys. He also doesn’t commit to sitting until the Saturday before.

I’ve called way to many sitters to count. Either they have no openings or they don’t sit on Sundays. I do have one more number to call, however she is a 20 min drive the opposite direction. Last resort!

I also need to find someone/thing for Eli on Fridays. He needs to be taken to school and pick up and dealt with until I’m done with work. There is after school childcare, they won’t commit to just taking him on “just Fridays” until 2 weeks prior to the date I need them. What if they are full?

My current sitter keeps the boys until 1 hr prior to me being done at work. During the summer she agreed to keeping them longer. I’m worried she may not feel that way now, seeing she is already cutting her hours of sitting.

I need to work 24 hours of a weekend to maintain my extra pay as weekend only. Which is a large amount per hour.

I could….

1-Cut my hours from 36 to 24. Perhaps by not working Sundays. But still stuck with Eli’s situation on Fridays.

2-Go off of weekend only. Would have to work a day and a pm shift. Plus work every third weekend. New babysitter issues open up there. Not to mention that I despise the thought of my kids not being in their own beds at night.

Looks like no matter what I do I will be decreasing my budget dramatically. I will have the money that I pay my mother for sitting, but that doesn’t compare to the loss in wages.

I also work any and all holidays that fall on a weekend. Sure, this is nice for a few years, but starting this year it’s not that nice. I have to work Christmas and New Years day.

PooWee will go by his dad on Christmas day. I’m doubting they will take him as early as I would need them too though. Here too, he says, “we’ll talk when it gets closer.”

My heart breaks for Eli. As Eli really has no one. My niece did send the message through Grandma that she would take him if I didn’t find anything else. AWESOME offer, just feel that Eli may be uncomfortable. She’s the only person he would know as she will be with her “other” side of her family. I’ve threatened my mother that I was going to fly him to Arizona for Christmas! (She can’t get away that easy!) LOL

Andrew was more than willing to hang with Elijah until he got word that he too has to work.

I’m crossing my fingers that one girl at work will switch Thanksgiving for Christmas. Unfortunately, she is on Family Medical Leave for an undetermined amount of time.

It doesn’t look like Motrin will be taken out of my diet for a while. I’m sick of the headaches! SERIOUSLY, why does my head have to keep reminding me of everything going on?

I’m ready to say, “Screw it all! Watch out Coco here we come!!!” :) LOL!

Another thought was to look into dropping the hours and look at going to school again.

I guess only time will tell!

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Life Continues

October 24, 2009 · Filed under Andrew, Elijah, Family, My Boys, Parenting, Ranting, fustration, life, me, venting, whining

It’s been just as if not more chaotic since my last post.

Andrew is getting settled in his new lil pad. He loves  being out on his own. He’s grown so much in these past few weeks. Everyone has told me that kid’s start coming out of the teen attitudes and drama around the age of 22 or 24. Andrew has appeared to have already made that step.

He’s doing some babysitting for me on Sundays, as my sitter decided to stop sitting on Sundays. (UGH!) He is so much nicer to Eli than when he was at home. Eli loves just going over to Andrew’s place and sitting around. Eli also like both of Andrew’s room mates. I think he feels like one of the guys.

Speaking of Andrew’s new home. It’s the apartment that Eli’s dad had when he did all that horrible stuff to Eli. Andrew took caution in taking Eli there. We knew it could cause some horrible memories to trigger, but could also be therapeutic and show Eli that “it’s all in the past.”

Eli had done well with it. He has admitted to recalling what the place looked like 6 years ago. He got a bit freaked out, but got himself back under control. I believe it’s been more therapeutic than anything.

PooWee still and probably always will think that Andrew and his friends are the coolest people in the entire world. He doesn’t even want to come home with me! :(

I don’t believe I’ve told you all about our newest family member. I’ve been holding off due to wanting to post pictures. BUT, somethings up with my beloved computer AGAIN! (New one on the to get list from taxes!) I can’t get my camera to download my full memory card to the computer! And well…I haven’t really had the time to mess with the computer either.

Anyways….

Eli got a puppy for his birthday!

Yes, I am well aware that I MUST HAVE BEEN OUT OF MY MIND!!! I’m still trying to figure out what I was exactly thinking.

Puppy’s name is Kadin. Eli choose it after two to three days of trying out different names. Kadin means companion and Eli liked that. It fits the little guy.

Kadin is a pug (momma) and boston terrier (dadda) mix. AKA a Bugg.

Kadin is full of piss and vinegar. He loves to attack PooWee. Poor PooWee has Kadin marks all over.

Kadin and Eli started their puppy classes on Thurs. Though Kadin thought that attacking the cute lil girl puppy was more fun then listening. He is such a male.

Eli has done well with poop and pee duties. We are training him to go inside and outside. Just when we think we had an awesome day, he proves us wrong. He is gated out of all carpeted areas, BUT has now figured out how to JUMP the gates.

Kadin and Eli are truly going to be great buddies!

I can’t wait to show you all some pictures of the little shit. Plus, I got a gross one that will make you laugh!  :) He’s a creative lil guy as well!

Got this (stupid, annoying, nonsense…etc) FBA meeting at Eli’s school on Monday morning. I have yet to figure out how or why we need it. Someone tell me why MY request to meet with the classroom teacher and principal to discuss BoyA and BoyB’s relationship with Eli has turned in to THEIR CONCERNS being addressed. They won’t discuss anything about these boys.

And let me tell you…if his classroom teacher walks in plops in her chair, folds her arms across her chest and has the same glare she wore at the past meeting, I WILL FLIP OUT!! We are here BECAUSE of her and then to walk in with such an attitude. Like I’m wasting her time! Oh lady – you haven’t even seen the b*tch that I can be yet!

Eli’s VI teacher, K and I have talked at length about all this. I so do love her! This is the first FBA she’s been involved in, and she’s been teaching VI students for 33 years. She’s heard it’s a long dragged out process. LOVELY…just lovely!

My advocate will be joining us. I have mixed feeling about her. Though she is very nice, well informed on the laws, and has taught me a lot. She is an “in your face” type of personality. I really don’t care what she says to the classroom teacher or the principal, as I don’t have too many nice thoughts about them right now myself. But, she has gotten rude with K a few times. THAT BOTHERS me! K knows what she is doing and I trust her with all my heart.

Eli and I will meet with our advocate prior to this meeting. I trying to find the correct words to inform her that I want her to be nice. I want everyone to “play nice in the sandbox”. :)

Hopefully after this meeting, I’ll be able to sleep! I really miss my sleep!

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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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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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What DO I DO?

August 23, 2009 · Filed under Helping others, Ranting, fustration, life, me, venting, whining

Sometimes I just wish I didn’t know things. It would make thinks so much easier. But, easy just doesn’t seem to be the way my life goes sometimes.

I have been informed that someone whom, I care about is doing drugs.  This particular person is only a young teen. Immediate response would be to talk with the child’s mother. Just to call her up and tell her what I HEARD and am concerned about. I think it should be “checked” into. However, I stop and think again.

The last time a I spoke to this mother about a concern. My mother was yelled at by various people, Elijah was yelled at by various people, but NO ONE came to me about it. I had told only one additional person about this issue and that was my mom. Just to get her opinion on what I should do.

I was accused of things that were not true. I was glared at by others. This particular mother blabbed to everyone. However, turned out that I WAS RIGHT. Her child FINALLY confessed. BUT, my mother, Elijah nor me ever heard an apology. Nor did all the outsiders hear that I WASN’T lieing. Just really urks me.

This mother supports Elijah’s father. Speaks of what a good man he has become and how awful I am for “keeping” Elijah from him.

1 I have NEVER stopped Elijah’s father from seeing him. Would I if he knocked on my door….DAMN STRAIGHT!

2 This mother was not holding Elijah every night as he shivered in fear. Fear that he was going to be killed.

3 This mother doesn’t sit with Elijah in therapy every other week 5 years later. SHE HAS NO CLUE!

My mother and I are best friends. We share more together than anyone will know. I am ridiculed for how she watches the boys. Of course NOT TO MY FACE, just behind my back. But, these people don’t know that I do have another option. I don’t NEED mother to watch my boys. But, she NEEDS to watch them for the money. I can’t give her the money and someone else. They don’t know that often the boys are just a good excuse for her not having to attend something she doesn’t want to. Instead, I’m criticised over and over and over and over again.

So, what is all this venting and complaining about? I’m stuck on what to do about what I have heard.

Last year I choose to keep the fact that this child is VERY sexually active to myself and my best friend (my mother). Mom is the one that suggested it as we both know what the retaliation towards me would be.

Mother once again says…”Don’t say anything. Your just going to start trouble!”

Why is it that I AM STARTING trouble? I have never started trouble. I’ve just been open and honest. But, trouble always comes and I do turn out to be the BAD GUY to a lot of people. All because I don’t go blabbing my mouth from person to person. (Sure I’m blabbing here…but, if you know who and what I am actually talking about then stand up! Yep-that’s what I thought! 99.99% of you stayed sitting.)

So, I’m asking you…my internet friends. What do I do? I’ve thought of something anonymous, but fear it will still come back to me. Do I just leave it well enough alone and hope this was the one and only time this teen will use?

There is part of me that REALLY DOESN”T CARE of the replications, as it’s helping someone I do care about. But, it’s also going to hurt my mother as I would bet my life on it she would get “beat up” by others for me saying what I heard. AND yes, no one would come to me. My mother would once again become a major wreck and perhaps again be drawn to tears as these other people yell at her for something I did. (Out of good faith!)

I’m not worried about what is said behind my back, wish they had the guts to come to me. It’s so juvenille.  I don’t care what these people think of me. But, I do care about my mother getting hurt AGAIN and perhaps Elijah too!

Help…….

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Home Modification…My ASS!

April 14, 2009 · Filed under Blind, Elijah, Ranting, fustration, venting, visually impaired, whining, work

Right now I so want to announce my employers name. I want to let everyone know who the B@stards are that are denying my son a CCTV. An assistive technology device that will allow him to read his textbooks, a comic, or even the directions on making mac and cheese without straining his eyes. A device that will make up for his vision loss. A device that can only help him and benefit him.

I called my insurance company yesterday, as it marked the 30th day my claim was in the review process. The lady was typing my denial form up when I called. My insurance is employer provided so they make the “big” decisions. It is my employer that denied my claim!  The reason…

“A*****s is not making any home modifications at this time.”

I sent them the necessary information supporting a CCTV as a durable medical equipment and a prosthetic device, so they couldn’t turn me down in those areas. But, gee look at that…they found a new reason to turn me down.

I am so PISSED! I so want to go off on all the stupid ass awards they pay for. All the unnecessary advertising  they hang up through the community about how awesome of a place they are. I so want to tell all about the awful things as an employee I see. I would just love to spread the name of the business or person that is denying a blind child a better life.

I emailed an attorney out of New Mexico that has fought for CCTV funding from insurance companies. He replied right away with, “a CCTV is NOT a home modification.” He gave me some more ideas to look into and stated that I may be able to appeal my insurance company as well.

Through a parent advocate class I was taking on having special needs children  have the support of a few organizations. I am currently working with a resource specialist that is getting ready to assist me with the appeal.

I can only look at this as being…

ONE STEP CLOSER!!!

Elijah will get a CCTV. I’m not stopping this time.

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And we wait some more…

March 31, 2009 · Filed under Elijah, life, venting, whining

Last week I received a surprising letter in the mail. It was from Elijah’s father, JW. Apparently the courts feel he needs to start providing health care insurance to Eli. Which our divorce papers state he is suppose to, but never has. I’m thinking it has part to do with Eli’s Medicaid. The state probably feels if they are paying JW should too. I couldn’t agree more, but wonder why they didn’t go after him before Eli had Medicaid.

I somewhat had to laugh, because it was very apparent that JW was not the one that wrote the letter or even addressed the envelope. The handwriting was no where near his. I recall this so well, his wife is taking care of his responsibilities because otherwise it will be tossed in the closet. Hey… if she wants to, more power to her.

I had to provide JW with all of Eli’s insurance coverage information. I expressed my need for an insurance card. I also asked for a booklet as I will now need to make a claim to his insurance for the CCTV as well. I’m doubting he will provide an insurance card to me, but he has to, so I can provide the information to Elijah’s health care providers.

I see JW’s insurance as a good and bad thing. Good in that if I can get my insurance to cover a CCTV  can get two. Right?! (I hope!) And bad because this is only going to prolong the process. We are currently on day 19 of my 15 to 30 day wait with my insurance company.

Along with my response I enclosed forms for him to sign for Elijah to change his last name to mine. This was done per Elijah’s request. He asked for this years ago. I always told him to wait and see what the future brings.

Well, the future has shown him that JW wishes to be absent.

JW can check “yes” he agrees to it, or “no” and he needs to stated his reason for not agreeing. If I receive any response I will be floored. Even a no response will shock the h*ll out of me. I enclosed $3 to cover the cost of a Notary Public. And I sent it certified mail.

If he doesn’t respond I will place a legal notice in the local paper and wait out our time.

If he responds with a no, we will decide if we continue to go to court or not. We can just wait until Elijah is 14 and we don’t need JW’s permission at all. Elijah can make that choice on his own. I guess it will al depend on the money that will be involved.

Originally Elijah also wanted to change his middle name, which is named after JW. I told him I thought he should keep it to remember the good parts of his father. He has agreed.

When JW got married this past summer he changed his last name. So we do somewhat wonder if he will agree, just because he doesn’t carry the same last name anymore. But, knowing JW he will probably say no or not respond just to be an *SS.

So we wait! Right now we wait for my insurance company to respond to my CCTV request. We wait for JW’s insurance information. We wait for JW’s response to Elijah’s last name change request.

I don’t like waiting…..I’m very impatient with stuff like this. I want my answers NOW! :)

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Elijah Elijah Elijah

March 16, 2009 · Filed under Blind, Elijah, Family, Helping others, Parenting, fustration, life, me, venting, visually impaired, whining

There always seems to be something pertaining to Elijah that is eating on my mind. Currently I have a few thoughts ripping at me constantly.

*Tomorrow Elijah has his appointment with Dr. H, his spine doctor. If his disc has slipped anymore Dr. H may propose surgery to fuse the disc in place.

I sure hope he doesn’t need surgery. Back surgery just isn’t a good thing and at such a young age.

But, I keep having these thoughts that IF he does have the surgery will he be able to go back into football, gymnastics and wrestling? Will he ever be able to play these sports that he loves so much again? Guess these are questions I will have to save for Dr. H tomorrow.

Elijah is more worried about the IV then getting his back cut open. He remembers waking up from his hernia surgery when he was 3 and having the IV with an arm board on to protect it. He did not like it…AT ALL! If he could have, he would have ripped it out.Oh it makes me chuckle now to remeber how mad he was at that darn IV.

*Summer school……….UGH!! His classroom teacher suggested summer school for his reading fluency, ONCE AGAIN!!! GGGRRRRR!!!!! This poor kid is constantly being told he reads too slow. I’m so sick of hearing that, seriously people!! I would really like to make a pair of glasses, blur out the center, put 4 to 5 black spots, representing his blind spots on the lens and tell his teachers to read fast. HE IS NEVER GOING TO READ PRINT AS FAST AS THE REST OF HIS PEERS!!!!

I’m all for helping him improve from his current state. However, I think that we are driving him to despize reading by constantly pushing him and making him do extra work to improve. I want him to enjoy reading.

After looking at his summer camp schedule and summer school schedule he would only be at summer school for at the most days. Does it pay? His teacher says, “Yes, some school is better than no school.” She also stated that if I chose not to send him, she believed I would work with him during the summer. Which if I do not send him I will set up a reading contract with him. I plan on making a reward system for him.

Looking into Elijah’s future he will always read print, large print, but for lengthy reading he will read braille. I believe there will be a time when he is proficient enough in braille that he will read at the same speed as his peers. I would so much rather see him get braille this summer verses reading.

However, braille is not an obtion fr summer school. There will be no vision serves verses his adaptive equipment available to him.

So…do I send him to summer school?

*Called my insurance company on Friday for an update on my CCTV claim. It has yet to go to the review board. I should hear something in 15 to 30 days. THE WAIT IS KILLING ME!

*Counseling continues on Thursday. We thought he would be done, but more and more information about the events his jack*ss of a dad did to him are coming out.

On the way home from our last visit, Elijah started crying. He wanted to know why his dad did these things to him. He asked why his dad has chosen not to see him for 5 years. He also mentioned he is sad to see his friends with their dads and seeing Andrew and PooWee go to see their dads.

I told Elijah that I honestly can’t tell him I know how it feels to not have a dad around, because my dad was always there for me. I told him it hurts me to see him have so much pain and I wish I knew how to help him. I ensured him that it was NOT HIS FAULT his father does not see him. I believe his father is running away from the mistakes he made verses facing them. His father has decided not to do supervised visitation and parenting classes because then he would have to confess to his errors.

I’d be lieing if I said I’d like to see his father come back into his life. Maybe I’m a bit selfish here. If his father ever comes back into his life, I just see more pain for Elijah. However, if Elijah ever wants to try and reconnect with him, I will support his decision. I will make sure the contact is done slowly and in the proper manner.

I’m hoping that Elijah’s counselor will work on these feelings with him more on Thursday.

*We’re crossing our fingers I can switch shift with someone so we can go to the VisionWalk in Milwaukee on May 31. All proceeds go to retinal diseases…how could we not go, Elijah has a retinal disease.

It would be a long day for us. Milwaukee is about 4 hours from us, we would need to leave about 4-5 am and I’m sure we wouldn’t get home until late. BUT IT WOULD BE SO EXCITING AND REWARDING!!! I WANNA WANNA WANNA GO SOOOOOOOOOOOOOOOO BAD!!!!!

*Elijah is currently working on a piece of artwork to enter for the American Printing House for the Blind InsightArtwrk Competition.

They choose artwork for calendars, cards and some for an exhibit at the museum.

I’ll be sure to post a picture of his finished piece.

GOOD LUCK ELIJAH!!!

Well, that’s about all…for now.

Elijah, Elijah, Elijah, he sure know how to keep me on my toes! I just so very much wish he didn’t have to go through all that he does. I try to live by the good ‘ol saying, “God only hands you what he feels you can handle.” Perhaps God knows that Elijah is strong enough and special enough to handle all that life hs handed him in his short 10 years he been here.

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GRRR! I’m on Fire!

September 29, 2008 · Filed under Family, Ranting, fustration, venting, whining

Why is it that one phone call can get me so irritated. This phone call coming from one of my sisters, K. A sister who hasn’t called me in, oh my, I don’t even know how long.

The phone call was her attempt in making me feel guilty about a couple of things, but all she managed to do was get smoke out of my ears. She happened to call me when I was in a store. I maintained myself and just sat on the phoned shocked at what she was even saying. After I hung up I felt like hitting a brick wall.

Here’s the deal. My Uncle and Aunt are having their 50th Wedding Anniversary. The celebration is this Saturday. I’d love to go. But I can’t, I’m working. I need atleast two months notice to take a vacation day. When they first started talking about the anniversary it was just going to be small and I wouldn’t have been invited anyways, so no need to take a vacation day. Well, things changed and they decided on inviting the nieces and nephews after all. I wrote my request for switching hours. There are only two other girls that work my position, they couldn’t or didn’t want to switch. They don’t have too, so I have to work.

I work weekend only by my choice. It gives me more time with my boys overall. Getting paid more is also an added bonus. With that, I have also chosen to miss events that happen on the weekends. Except it people, I won’t make everything!

K had a “solution”, she always does. As long as it makes her look like the hero, she’s game. Well, I should goto this party after work. I only need to go for a “half hour”. I should feel “obligated to go” because uncle and aunt “always send us birthday cards” and a “50th Anniversary doesn’t happen too often now a days”.

She proceeded to tell me that she is out of state in Nebraska and leaving her event early Saturday morning to drive home just to make it. Good for her. I glad she has found a way to make it!

I explained that I have my substitute sitter watching the boys that weekend and she can’t watch them any longer because she is also working Saturday night, night shift, and does need a nap before going in. Kids are not invited. Oh K had the solution once again. “Can’t Andrew babysit!” Sorry, Andrew is working until 10. Well, then she added “Her girls were available. They are 15, 21ish and 24ish. Oh, I soooo would not ask them to babysit.

If I paid them $5 less than what K thought I should, believe me the whole family would hear a dramatized story. I can hear it now…Her daughter(s) were kind enough to make sure I could make it to the party to watch my boys. Without them I had no other way to go. And then they only got X amount of pay when they should have received XY amount. Let’s not forget that I am already forking out an EXTRA $100 for my substitute sitter.

I’m realistic here, maybe because I’m the one that would have to “live” the schedule that I would be on just to go to the party.

Saturday Oct. 4th

5:30 am- rise and shine! Time for a 12hr shift!

7:00pm- done with work. IF I’m lucky enough not to have to stay after because of an admit or a code. (Although, who cares if I’m needed to help save someones live…I’ve got a party to go to!) Sense the sarcasm!

7:15pm – arrive at sitters. Hope the boys are all packed up and ready to head over to another sitters house. Don’t worry about a 22 month old not seeing his mommy all day or a 9 year old that has alot to talk about, we gotta go! They need to get to another sitter’s house and I need to get to a party.

7:30pm – Hopefully we are at the next sitter’s place by this time. Now, I get to deal with the agony of saying good-bye to PooWee. I know he isn’t going to like it. Basically, he wants to be at home, nursing and going to sleep. (WAIT that’s right! I shouldntbe nursing him anyways…”he’s almost 2 years old already!”)

8:00pm-(doubt it!) At home changing from work uniform into dress-up clothes.

8:30pm – leave home for my “about 20 minute” drive. (K thinks this is the length of time.)

8:50pm – Arrive at party. I only have to stay 30 minutes!

9:20pm – I get to leave.

9:40pm – picking up the boys from the sitters. (Haven’t I already been through this?) I’m sure PooWee will be alot of fun…it’s only well over an hour past his bedtime.

10:00pm – am I finally home? Gee what do I d first. Try to put the overtired baby to sleep. He’s probably on his second wind and isn’t thinking about dreamland what-so-ever. Do I start unpacking from the day and repacking for Sunday? Do I finally get myself some supper? Do I make sure the animals are all feed or can they go for one day without food? How well is Elijah going to cope with no attention as well?

I think my bedtime will be midnight, if I’m lucky. Fine, if I didn’t have to get up and work another 12 hour shift on Sunday. Boys will be over joyed to get up at 5am after getting to bed super late. But, hey I don’t have to deal with them the following day, the sitter does. WAIT! K doesn’t have to put up with them either!

I know this is something she would not have done when her kids were younger, so why is she telling me to do it?! My theory…she wants the credit for getting me to the party. Me and everyone else she was calling who weren’t going to make it. Uncle and Auntie were round and round about who was all invited, then invites went out and there are quite a few of us that can’t make it. We should feel guilty about it?! I’m sad I can’t make it. I will be sending them my regrets with their Anniversary card.

Makes me wonder why she felt the need to call me for this, but never called me to tell me that the family reunion was on this year and where it was.

But this isn’t all she had to say to me. Oh no…there’s more! I’m not going to elaborate on the next issue too much as I don’t want to hurt someones feelings. (She reads the blog.) Lets just say that B bought something for Mom, agreed to pay for additional expenses and for some reason isn’t liking paying these expenses anymore.

Well, K feels I should take on these expenses because, “Mom has your kids.” WHAT?! Did I have anything to do with this agreement from the beginning? NO! I was NO WHERE IN SIGHT! Mom and I have our own arrangements. I DO pay Mom for what she does for me, I DO appreciate what she does for me and I owe NOTHING towards B and Mom’s agreement.

K says this agreement is getting in the way of Mom and B’s relationship. AGAIN explain to me why I’m involved? Because she watches my boys?

She mentioned B has no clue of her asking me this. I think she was out of line in asking me this. I will be talking to B about this and explaining my position. I’m sorry feels she can’t go on with this arrangement with Mom, but I’m not going to pick it up. Number 1, I can’t afford it! I’m sad it has come between her and Mom, but it’s not my responsibility to pick up the pieces. I can’t!

I find that K has a much better relationship with B than with Mom. So, she finds making B happy to be her objective. And to be the hero in this difficult situation would just make her shine!

K feel free NOT to call me with anymore of your requests! I’ve had enough of them for quite awhile!

I wrote her a letter pretty much the same as this post. I would have called her, but felt my tone would be more appropriate in writing. I’m positive there will be so many more negative things said about me now. Honestly, I don’t care.

For example: Her daughter once made a bad choice and walked (intentionally) out of my house with Andrew’s sweatshirt. Andrew’s friend saw her carrying it outside as well.  I called her that night and asked her to bring the sweatshirt to school to Andrew the following day. She denied the whole thing. I explained that we all make mistakes and all will be forgotten when she made the right choice. I spoke with K about it as well.

Well, my niece went on with her lie for quite a few months. In this time I spoke to Mom about this situation and that was it. K on the other hand told EVERYONE I was accusing her daughter of stealing from me. People went off, I mean yelling at MOM for all this, YELLING at ELIJAH for all this. But not one person came to me. My mom never even started the conversation about the sweatshirt, they just felt she needed to hear what they had to say! (Yeah, this is my family! – Sad I know!)

Funny thing is the guilt took over my niece. She called Andrew up one day, returned the sweatshirt and offered to give him $50 for it, but he refused the money. My niece grew…she learnt from her mistake and took the responsibility in fixing it. I don’t hold a grudge against her.

But, I do hold a bit of a grudge against K. As NO ONE was told that the situation was that her daughter had stolen from me. NO ONE apologized to MOM or ELIJAH for yelling at them about what I said her daughter did.

If anybody is wondering why I choose to separate myself from alot of family involvement these are the reasons why. I find my family to be very “clicky”. Reminds me of high school hallways. Not everyone is this way, but it only takes a few to make a statement.

I can’t wiat til the day I move ou of this city and leave all this and more negativity behind!

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A Quick Vent! And Plea for HELP!!!

August 16, 2008 · Filed under Blind, Elijah, Ranting, church, fustration, religion, venting, visually impaired, whining

GGRRRRR!!! I have been searching…and searching…and SEARCHING for a LARGE PRINT Bible for Elijah! I can find all the braille Bibles in the world… but a large print one, HA!! Many say large print, but he needs about an 18pt font and most aren’t. Plus I’d like to get it as close to the one he received from church. Which is a New Revised Standard Version, adding that just makes this search a whole lot funner!

I did find one that I thought would work. Well…the $117.00 price drove me to search further!

ANYONE…SOMEONE…HELP!!! Sunday School is about to begin and I don’t want Elijah to struggle like last year! His Bible is not appropriate for him, not even with his magnify glass!

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