Another Exciting Day for Elijah

I’M SO EXCITED!!!

I had Elijah’s IEP meeting this morning for next year, 4th grade. After all the ranting I’ve done this past year, next year is looking so positive. After today’s meeting I think I have the best IEP team there is! Here’s a run down.

-Karen-VI teacher will be visiting Elijah twice a week. She is going to start to teach him Braille. Now, according to the ladies at the Low Vision Clinic, Karen is rated top notch in the state for Braille teaching. Only the best for the E-man!

-Jeanne-Mobility Specialist willbe visiting Elijah once a week. She will be exploring the community more withhim, continuing with the long white cane, as well as a guided walk (such as when they hold your elbow). She sternly told me he is touse the cane EVERYTIME he leaves the house. Oopps! My BAD-I let him use only when he decides to. Eli’s current teacher, Jane also got “the look” when Jeanne found out he doesn’t take the cane on field trips. HA-I wasn’t alone.

-Elijah’s teachr for next year is Mr. S. (Not sure of his first name.) He appeared very interested in Elijah and was taking notes like mad. I warned him that I like to email to find out how Eli is doing. He said that was great and that he encourages parents to do so. —Although, he was young and quite cute, so…I’m think dinner and a drink may be a better option for me! HA! Just kidding!

Jane and Mr. S had to leave early to attend to their classes. I was actually happy about this because I didn’t have address my concerns for this past year infront of Jane. I didn’t want her thinking I was nit picking her. There was just alot of work sent home or even done at school that wasn’t appropriate for Elijah’s vision. Like word find puzzles. Try a whole packet on dark blue paper. Craft projects that need cutting and the lines are very thin. Homework that most definitelyneeds to be viewed on his CCTV at school. Karen and Jeanne both agreed with my concerns and were even shocked at some of the stuff I was talking about. I expressed that I understand Elijah’s disability is not visual to the rest of us, so I think it’s easy to “forget” about his needs.

When I got home I had an email from Karen asking me what I thought about her aid sitting in Elijah’s Math class next year. She was concerned with so many little things that were over looked this year and she is not able to be with Eli all the time. I thought it was a SUPERB idea. This aid will surely help Elijah get what he needs. And she will be able to assess work that he just can not do, like word finds.

YAY!!!   YAAAAAAAAAY!!!!!!!!!!   YAY!!  YAY!!!

I am just so thrilled that all went so well. Some amazing things have happened for him these past few weeks and I am so grateful! 

Jane acknowledged what an amazing kid Elijah was. She told Mr. S not to worry that Elijah will definitely surprise him.

Our goals are to make sure Elijah does not fall into another depression like he did this past year. We think with all the extra visits and support he will do just fine. He really enjoys working with Karen and Jeanne. i told them when I pick him up from school he doesn’t even say Hi to me. First thing said is, “I’m hungry!” then he tells me Miss S or C came for the day. Jane stated Elijah’s excitement as well, when she relays that they will be coming.

He will continue learning about his eye condition. We would like for him to be able to define his condition. Explain what the purpose of cones and rods are in our eyes and what causes his not to work properly.

We are hoping he will improve on being a self advocate for himself. He tends not to voice when he can not see. He will be in charge of assessing his homework for enlargement. Marla the principal stated he could even learn how to run the copier and do it all on his own. First he’ll have to determine if he can see the buttons on the copier screen.

Yes, I think 4th grade is going to be a good year!

I’m Tempted…

to disconnect the internet for the summer. Not only the internet, but unplug the TVs.

We live for summer around here. It’s not that we waste alot of time on these things, it’s just that sometimes it’s easier to watch a video in the evening than sit outside under the stars.

I’d like to take the money I’d save and go camping, take a day trip, whatever we feel like doing.

Andrew’s by his father for majority of the summer. He comes home 1 week a month. He doesn’t like the idea, because he wants the internet when he is here.

Elijah, well we all know how busy he is. He actually stated, “I don’t care, I’m not going to be here anyways.”

PooWee, I don’t think he’ll notice too much. Although, Andrew did find him Fisher Price Infant Online Games. Which he does love. He is rather cute playing them too. He’s quite insistent when it comes to “his turn” on the computer. But overall, I think he will survive any serious withdrawals.

Then there’s me…I’ll miss checking up on all you. I’ll miss writing my post and checking for new comments. And then there’s my email. I’ll lose my account with my internet server, but could set up a free account elsewhere. I’d have to change over alot of my bills. I could check in now and then from work. Oh, all the good stuff I’ll miss. BUT it’s only for 3-4 months!

PLUS-my internet company is always offering a deal…basic cable, internet and phone for only $9.00 more than what I pay for just internet. I’ve called and can’t get the deal because I am an EXISTING customer. WHATEVER…but I was told if I leave and come back then I can.

This is a bonus for us because Andrew and I have cell phones, but no home phone. We do only get 1 channel. Well, actually 2, but the second one is so fuzzy we don’t watch it. And when winter rolls around again and we are home bodies, we have more options on TV.

HHHMMM what to do…

My E-Man

It’s been a busy week for Elijah. We have learnt so much more about his vision and are preparing for the next school year already.

First last Friday he went on a field trip with other VI kids in our area to the University. An adaptive Phy Ed class was holding a gym class for VI kids. He had a lot of fun. I guess he is the Goal Ball champ. Goal Ball is somewhat like soccer. Those that have some vision must be blind folded. There is tape on the floor to mark out boundaries and everyone is on their hands and knees. The ball has a beeper in it, so you hear where it is. He loved it.

Monday was ruff for him, he had a nasty head-ache which lead to an upset stomach. He often gets head- aches from eye strain or strain his neck muscles by holding his face so close to his work. I picked him up early from school. The head-ache went into Tuesday as well.

Tuesday night we had a Visually Impaired Family gathering. It was nice to get together with other families and just chat. It was sponsored by the Wisconsin Center For The Blind and Visually Impaired (WCBVI). The ladies that hosted it were a blast. There was alot of laughter going on.

Wednesday morning WCBVI held a Low Vision Clinic that assessed Elijah. We chatted how his vision affects him. We talked about more testing in the future. His doctors at the University Hospital want to do more exams to “rule out” Stargardts disease. It was interesting to find out that for some reason in the eastern side of the state Stargardts is common. Researchers are trying to find out why, whether it is from the Great Lakes in the fish or what. Elijah’s father’s mother grew up over there. Sometime within a year we will have these exams done.

There was a doctor that did a vision exam. For me I was able to see what Elijah couldn’t see. He sat in a chair about 6 feet away from numbers and he was unable to see them when they got to about 3 inches tall. She also did a color exam. Which we know he is color blind, but it was crazy again to actually see what he could not. We’ve all done these color test. A colored number hidden inside a different colored circle. I’m sitting in my chair thinking, “13, Eli, 13!”  But, he’s just staring at the picture, trying to find the magic number.

I knew his vision was 20/200. Meaning what we “normal sighted” people can see at 200 feet he can see at 20 feet. I knew he was colored blind, but never truly saw how badly. (He does see some color and normally only goofs up on blues and greens, oranges and reds, colors that are close in comparison.) It was very “shocking” for me to learn more of how he sees.

His next assessment went over his magnification. He currently uses 7X. L the visually tech. decided he could get away with a 4X. This will allow him to have a bigger magnify glass and able to view more at one time. (The bigger the magnification the smaller the lens.) With normal font size in text books 4X should be sufficient. He was able to take 3 magnifying glasses home for a few weeks to try. We will purchase the ones he like the best.

L was such a great support for Elijah. She was funny and spoke to him at his level. She told him that he is fortunate with his condition that he can always “block” me out when I am yelling at him. Which, I told her he has already figured out. (Because he has central line of vision loss, he uses his peripheral. So, when he looks at you it looks like he is looking to the side of you.) Elijah expressed that he thinks it “cool” that he can stare at someone and they don’t know he is staring at them.

I had to share with L how Elijh likes to use his vision to embarrass me. - When he first got his white cane, we went out to eat. I got glares because I wasn’t helping him. Well, we laughed at these glares, but Elijah has taken it one step further. When we go shopping he likes to take his cane in the stores. Then the little sh*t will run into things ON PURPOSE, just so people really think I’m a HORRIBLE mother. I told them I just continue walking and pretend I don’t know him. Boy, did they laugh. L figured out what a STINKER Elijah truely is! 

L asked Elijah what other good “tricks” he has. Elijah stated that Mineral Oil in Andrew’s drink is always funny! (See what I have to put up with!) 

L went over his reading. K, his VI teacher assessed his reading at 48 words per minute. Which is slow, we know it’s because of his vision that he can not read faster. L expressed that for now, this is acceptable, however as he gets older this will become a problem. She talked to him about Talking Books and Braille. She asked him how he felt about Braille and reassured him that it’s not just for people who can not see at all. It sounds like Elijah will start to learn Braille next school year.

If any of you recall, afew months ago I suggested Braille to his Individulized Education Program (IEP) team. My suggestion was blown off. Now, I will hold my head high and NOT say, “I told you so!!!” I guess having a professional say it, is stronger than a parents word. Now K has more power to take to the school board. Braille is very time consuming and costs the school lots of money. I am happy to say that K is rated top notch in Braille. She loves it and loves to teach it. She seems kind of excited to teach Elijah.

Next we headed off to sunglasses. As we all know EVERYBODY should be protecting their eyes outside!!! YES, THAT MEANS YOU!!!! With Elijah’s eye condition it is even more important that he protect his eyes. He has light sensitivity and certain lights hurt his eyes, yet he needed extra light at times. He got to try on many different lens colors. They walked outside and he decided which ones worked and which ones didn’t. Different colored lens let different light rays in. Some really hurt his eyes. He went with the copper lens. He now has a pair that he can try for a few weeks. If they work the best I will buy him a pair.   

Sunglasses have been a battle. He admitted to not wearing them because the other kids don’t. L snuck on in and had another great conversation with Elijah on wearing his sunglasses. At school Elijah was asked why he was wearing them and he said, “because my doctor said I have to wear them outside to protect my eye. The sunlight hurts my eyes and these glasses help.” YAY!!_Way to go Eli! I hope he continues to be so strong!

Unfortunatley, the gentleman that bring technical devices like CCTVs and electronic magnifiers could not be there. However, next fall when the clinic comes back, we will sneak into check out the technical aids that will assist him.

Again, this clinc was AWESOME. These ladies were EXCELLENT. I took so much out of it. My mom came as well and was very happy she did. I wish I would have pulled Andrew out of school to come as well. I think it would hve helped Andrew understand his vision better too.

Well, I’m now off to send a Thank You to the WCBVI for this wonderful (FREE) clinic.

WAIT! Must tell you all about his summer…

June 20 - 22 he’s in Milwaukee for a Sports camp. Sponsored by the U.S. Association of Blind Athletes.

July 6 - 18th he’s at Folk Arts, Fables and Fantasy Camp

July 20 - 25 it’s off to the Wisconsin Lions Camp.

Did you notice…he’s only home for one day between the two camps! Almost 3 whole weeks away, I hope it’s not TOO much. He really wants to do it, so we’ll give it a try.

Plus, he’s has a Cross  Country camp, swim lessons, gymnastics camp, soccer and then football at the end of summer. BUSY, BUSY, BUSY!!!! I really want to get some FAMILY camping in there too! HHMMM-any ideas on how to get more time?!!

PooWee

Amy-Thanx for asking…PooWee is doing just great. His ear surgery went fine.

It was truly a 10 minute procedure. But boy did he wake up PISSED OFF!!!! He was so hard to hold, he was just throwing his body every way he could. I could barely hold him. Once I sat down and offered to nurse him he was in seventh heaven then. He nursed for about 10 minutes. Then he realized there were lots of nurses to flirt with in the recovery room. We left shortly after and he slept for  FIVE HOURS once we got home.

Knock on wood so far no ear infection. In the past he’d be on an antibiotic for 10 days and by day 12 or 13 we were back to the doctors. He stopped his ear drops from the surgery on Wednesday, so cross our fingers all stays well.

He’s loving his bike seat I got. The helmet is another story. The neighbors probably think I’m strangling him when I’m trying to get it on him. Once it’s on and we’re biking he’s fine. Hopefully, he’ll learn to except wearing it.

He also has to learn his boundaries outside. My yard does not have a fence, so I have become the fence. He gets quite mad that he can’t run all over the neighborhood. Three times of turning him around and walking him back to our yard ends him in the house. Then he’s REALLY MAD! He’s a stubborn lil thing, strong will to do as he pleases. It’s a whole new world for him out there!

He also had his first dentist appointment Thurs. He managed NOT to bite anyone, but once again he didn’t like what he was going through. All looks good there. No fluoride treatment though, as he wouldn’t cooperate.

Well, it’s way past my bedtime. Gotta go snuggle with PooWee!

HAPPY MOTHERS DAY TO ALL YOU WONDERFUL MOTHERS

(((hugs)))

Should I Be Surprised?

As many of you know I work at my local hospital. Of course this is also the hospital that my family seeks their medical needs from.

PooWee had his tubes placed today. Friday when I called Patient Registration to get his surgery time I requested him to be a PRIVACY patient. Why? Because of my “lovely” co-workers that will be viewing the OR schedule. Some of them will very much enjoy finding a way to make HUGE rumors about his surgery. AND because it’s MY RIGHT!

For my job I need to print the OR schedule and look it over for any scheduled/potential patients coming to my unit. When I was doing this I came across PooWee’s name! Technically, they usually put Wausau, Male for anyone choosing to be private.

Once again the hospital has ticked me off! Not as an employee this time, BUT as a customer.

My concern was addressed to the House Supervisor, who said, “I’m sorry this has happened. Did you talk to K about this?” and walked away! It’s SUNDAY -YOU CAN’T GET ANYTHING DONE ON A SUNDAY!!! NOT EVEN IN A HOSPITAL!

The following is a copy of an email I sent K - patient advocate

 

 

 

 

 

K- I am upset because I had requested my son to be a privacy patient for his procedure scheduled for Mon 5-5 @ 0830. I did this when I had to call PARC for his arrival and procedure time. They had me call Patient Reg. which I did.

Well, today when I go to print the OR schedule his name is on there. I called Patient Reg again and the girl told me that on their end he is. BUT he may not be at scheduling’s end. Scheduling is not here on Sun. and by the time they come in on Mon. we are already here.

Being a Unit Clerk here I was able to know that my wishes for Privacy status were not granted. I am quite upset. There’s a long story behind wanting him Privacy, but point blank it’s because of people that work here and will be viewing the OR schedule.

 

 

 

It’s TOO late. And I hope I won’t be hearing new rumors or discusions about me and my son. As I told a friend, I could say he had a paper cut and a week later it’ll come back to me that someone told someone he had his arm amputated.

 

It’s very aparent that there is a breakdown in Epic or in the way Privacy Pt is set up. Why didn’t Patient Reg notify ALL departments that needed to know?

 

I’ve had to deal with alot of issues based on my son as an employee. And now as a “customer” I have been denied my right to have his procedure private. Yes, in a way you could say I am furious. I did speak to R House Super. about this on Sunday. She stated she couldn’t do anything and said she was sorry. (WHATEVER! - Where’s our customer service here?) She did ask if I wanted to talk to you about it. Personally, seeing she has access to the scheduling in OR, I feel she should have made me happy and went in and changed his name to Wausau, Male like anybody else when they request to be privacy. (But on a personal note, she didn’t follow hospital policy when I went to her during work with an issue either, so why should she when I am a customer.)

GGRRRR K! I’m mad and “I’m sorry” is NOT good enough! My rights were violated.

 

 

 

- -MSICU Unit Clerk -

 

MOTHER OF I have spoken to K once on the phone today. I’m really curious to see how they are going to deal with this matter with me as a customer. I know how they handle matters as an employee and there THEY SUCK!!