Medieval Times - Eli Amazes Me

Elijah had an AWESOME time at WCBVI - Fairy Tales and Fantasy Camp. He went bowling, threw an axe and knives, went to a Renaissance Fair, went fishing, and so much more. They definitely kept the kids busy. We have tons of craft project that he made. He enjoys Art so much.

I was so excited to pick him up on Fri. It felt like I hadn’t seen him for 20 years. He has been filling my brain with educational information from the medieval times. It’s crazy how much he learnt. Did you know that if someone was being accused of a crime, they would place their hand in boiling water and if the hand did not blister they were found innocent. Gee, betcha alot of people were guilty!

The teachers all enjoyed working with him. They stated he was very well liked and they loved his enthusiasm.

He was even interviewed for their local newspaper. He most definitely was super-duper excited about that.

Elijah and I are thinking that the school has spooks in it. HA! He left his shower gel in the shower and went back to get it right away and it was gone. He left a bracelet in one room and went back to get it and it was gone. He also left his white cane in a room, went back to get that and that was gone. None of these items have shown up. Our only explanation is…there are friendly spooks that enjoy taking things to confuse the students. - He got a brand new cane out of the deal! His other one was stuck together and couldn’t be folded up, so we were pretty happy!

Update: Just spoke with the DPI dude that I had dinner with a few months back (Yeah we still talk, he was in town so he stopped to visit PooWee and I) Well, I told him about the spooks. He said we weren’t the first to say that and he believes the school is haunted. He said he wouldn’t want to sleep there. Sounds like they are friendly spooks though, they just hide your stuff!

I took him off to the Lion’s Camp yesterday. He saw some of his friends from the WCBVI. I told him I think he going to find out that he will spend much of his summers with the same kids. We called them his summer family. Its so great that he spend time with kids like him. He’s got friends that are younger than him up to 1 years old. One boy at WCBVI is 17 and Eli and him really connected. How great is it that he has someone like him to look up to.

I also find it so heart warming to see Eli assisting kids that have more of a vision loss than him. You will often see him guiding them as they walk. When it comes to these camps, Elijah is actually more fortunate in his vision than so man of the other kids. Last year at Lion’s Camp he was nominated for “Future Camp Counselor” because he assisted so many of the other kids.

I am just overwhelmed how far Elijah has come to terms with his blindness. Yeah we had our spout of depression close to a year ago. He picked up the pieces well and has moved on. I think the future will bring ups and downs for him. I know when it comes to his sports, like soccer, there may be a time that he just won’t beable to play on a team because it get more competitive. I’ve already warned him of this, but gave him the thought that he could manage the team and play during practices and such. He understands what I’m saying. I just hope at that time he will accept it.

Andrew came with to drop Elijah off at the Lion’s Camp too. Andrew too has come along way in excepting Elijah’s vision. At first I don’t think he believed Elijah was blind. Oh the arguments that went on because Elijah was too close to the computer screen, or Andrew couldn’t see a corner of the TV. I think it’s hard because Elijah’s disability isn’t visual to the rest of us. As I learnt about it I tried to teach Andrew. Once I found the color test with a number hidden in the circle on the computer and had Elijah tell Andrew the number. Because of his color blindness he couldn’t do it. I think this was an eye opener for him. He’s more respectful as to allowing Elijah to take something for a few moments and hold it close to his face to where he can actually see it.

It’s hard to envision Elijah’s way of seeing. Imagine only using your peripheral vision, mess up the colors some and then have some block out areas. Too much for me to figure out. When I lay in bed and watch TV at night I look at the wall and try to figure out what is on the screen. It’s not too easy. When I walk down the long quiet hospital halls I look off to the side and try to find my way. I don’t live this way every minute of my days, my son has to. I want to give him my eyes and take his. I can’t. But I can try to encourage him to continue to live life to it’s fullest and not let his vision bring him down.

I’m so happy he has these camps, because they allow him to be with others kids like him. He loves the camps and has made so many friends. I love that he is with a wide age group too. He has some very good influences to look up to.

I thank all the volunteers and those that drop their change into the blind camp donation box at the check out. You are the ones that make it possible for my child to feel “normal” even if it is only for a week or two out of the year.

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!

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?!!

Summer Can’t Come Soon Enough

Is summer really coming? I can’t wait for some sunshine and toasty weather!

Elijah’s summer is getting all planned out. Summer program forms are being sent home from school ever Friday these past few weeks. He seems to want to join everything from Invention camps to tackle football camps.

So far he’ll be going to the Wisconsin Lions Camp from July 20th to 25th. I want to go too, it is SO BEAUTIFUL there! He went there last summer for the first time and LOVED it! He only had one complaint. His group didn’t get to jump into the mud pit because the girls didn’t want to. (Those darn girls!) Elijah was actually nominated as a future camp counselor, because he helped out so much with the other campers. At camp Eli is “Top Dog”, he can actually sees better then majority of the kids. I was so happy he learnt to assist the others and was such a helpful young man. The theme of last years camp was crafting and my boy even got the Camp Crafter award! He got a patch and we put it onto his camp sweatshirt. He’s excited to go back.

He just turned in his registration form for a Camp Inventions at his school. That will be the week after Lions Camp. He is really excited about this too. One of his friends were in it last summer and told Eli all about it. He gets to take a VCR apart and other electronic items. He’ll turn into my Little fix-it boy after this camp!

Then there are two other camps he was really interested in. These camps are held by the Wisconsin Center for the Blind and Visually Impaired. Unfortunately the one he really would like to attend is during his Lions Camp week. This one is Touch the Stars, he loves his telescope and looking into the sky. We are getting information on the Folk Art Fables and Fantasy camp. This is a two week camp based on medieval times. Should be fun. However, he’s (and myself) are concerned that he’d be gone for two weeks, come home for three days and then head off to Lions Camp for a week. That’s alot of time away from his mommy!

Yes- all those donation boxes you see at the checkout for sending blind and visually impaired children to camp really do work! Eli attends all these camps FREE OF CHARGE! THANK YOU to all that donate! It doesn’t matter if I made $100,000,000 or $1,000 a year, he goes FREE! We always put our change in. Infact, last time I got $37.87 back as change and Eli was SUPER EXCITED to put so much in. (Even though we all know $37.87 really isn’t THAT much!)

KS-Eli’s VisuallyImpaired teacher just told me about a sports camp too. She not sure of the dates or if the deadline has gone past already, but she’ll be getting me more information. KS is looking into other activities for him as well.

To add to all that, we need to get him into his swim lessons, gymnastics camp and anything else he’s interested in. Soccer season is an all time favorite too. Unfortunately, he’ll miss three weeks of it due to the camps I mentioned above.

I’m excited to say Andrew will be around more for the summer this year. He will technically be with his father, but his father has now moved back to Wausau. So, this allows Andrew to join his Cross Country camp and run all summer in the summer running club. He is also planning on joining LaCrosse camp.  He enjoys his time with his father, but he didn’t like being two hours away all summer long. He would come home for one week a month, but was still unable to join summer programs with his friends.

Then there’s the PooWee man! HE GETS TO GO BIKING THIS SUMMER! I AM SO EXCITED TO JUMP ON THE GOOD ‘OL BIKE!! It has been two summers since I got to go out and bike my lil butt off. (First I was pregnant and the next PooWee was too small.) I’ve missed it terrible!

I have a bike trailer from when Eli was my little guy. It’s nice, but I’m really looking into a bike seat too. Now they have bike seats that go in the front of you. Anybody use one of these? I kinda like the thought of them. HOWEVER, how many times do you think PooWee will throw his head back and smack me in the face? OUCH!!!

I like the trailer for picnics and lugging extra stuff with us. The one I have seats two kids. There are just times that I didn’t like having it behind me. Plus, I did tip Eli in it once. I rounded a corner too fast. OOPPSS! He was fine and actually laughed and told me to do it again!

Eli also thinks PooWee needs to join Toddler Tumblers class at the YMCA. He wants PooWee to follow in his footsteps as a gymnast. I’m thinking about it. Eli has gymnastics tonight, so we may just check it out. PooWee sure would love his chance to get out and play on the mats just lie his big brother. My mom has been watching him lately during gymnastics because he’s just too hard to handle. He wants out by big brother, to jump and roll and run around on the mats. The parallel bars are quite intriguing to him as well. 

Summer, I can’t wait for it to come. I LOVE the heat! I love the sun shining in my eyes! I don’t even mind cutting the grass. I get to hang my clothes out to dry and then they smell so fresh! (And don’t forget the savings on the electric bill!) MMM, I can’t wait to grill fresh veggies on the grill. We are outside from morning to night in the summer. I just can’t wait to get out of this house and have some fun!

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Say Hi to Eli!

I forgot to mention that Eli has made his first blog entry. FINALLY! 

Stop by and say, “Hi” he’ll be super excited to get some comments!

Elijah’s World

Thanx!

On My Mind..

I never can seem to post on just one thing. Again today, I basically have a bunch of ranting to do. So, stick with me as I run through all that is going through my head.

-My blog stats are going crazy! Why? If you ask me, this blog is the world to me, but I can’t figure out how others find it interesting. Well, someone linked to My Days Without PooWeepost. Then another linked to it on her Mysp*ce account.

I ended up going back and reading the post again myself. Once again I hit a low, I cried, I was happy I had PooWee and then I also had anger.

In my head I kept thinking of so many moments that tear my heart apart. One moment was when Eli and I returned after yet another walk around the hospital to get away from all the visitors. As I opened the door to my room I was hoping nobody would be there. I was wrong! Lets see…there’s J & P, both of their mothers, there is J’s brother, his wife and two kids, and then there’s J’s sister and her son. So that’s 10 people, all here for J & P.

Eli was driving me nuts. He kept whining that he wanted to hold PooWee. I didn’t have the courage to speak up and get PooWee for him. I too wanted to hold PooWee, but of course said nothing. Finally, J got PooWee for Eli, I think she just wanted him to be quiet.

Eli and I were sitting on my bed. Eli was touching Poowee’s cheek. I had my arm around Eli and we just stared a our lil baby in ah. Eli began asking who he looked like. I so thought he looked like Eli. Eli liked that idea. I wish I had a picture of this moment. I think it would be beautiful.

Then there were arms pulling PooWee away. They were J’s, she said it was her niece’s turn to hold my son. I doubt Eli even had PooWee for 3 minutes. J’s neice had PooWee about 4 times already. J was jealous, she didn’t like us referring to PooWee as part of our family. She didn’t like us interacting with him and took him away from us. I can’t stand her for this. But I also need to blame myself. For it was ME that couldn’t speak my words.

Why was my voice so weak! Why didn’t I say, “NO! In-fact, EVERYONE LEAVE! Just leave and let us be!” That’s what I was thinking, but the words never came out! This happened to me SO MANY times! I never spoke what I was thinking.

I know I can’t dwell on the past, the past comes back to haunt me though. I want so much to now have a voice. A strong voice, that may help other mothers, or maybe even PAPs. I’ve come to realize that though I choose not to sign TPR, adoption HAS become apart of my life. I can’t change that. I hope to atleast make adoption better for others.

I know…no matter what, there is pain in adoption. But, if I can put warning signs out there for others, maybe I can help them make the best choices. LIKE NO PRE-MATCHING, or NO PAPs AT THE HOSPITAL. Take my pain and shield themselves from it. It’s hope, it’s my hope!

-On the brighter side, Eli is doing better. He is using his visual aids.

Actually, when his VI teacher walked in his classroom the other day, he was on his CCTV and she was super excited. They talked and he told her about his email pals, who are visually impaired (VI) as well. He is really excited about them. His teacher is setting up a bowling/pizza party for the VI kids in our area. She said there are two boys that she can’t wait to introduce to Eli.

I think this is so good for him. He will be will other kids like him and hopefully this will encourage him to stay strong.

His doctor appointment went real well. He actually broke down and cried. I realized he never really cried about his disease. Dr. W was AWESOME with him. He got down in front of him and spoke to him at his level. He reassure Eli he would never be completely blind. He told him he would retain some vision. Eli will see “fuzzy” in his central line of vision. Dr. W told Eli is vision will not deteriorate fast, but so slow that throughout life he really wouldn’t notice. He encouraged him to use his aids and expressed how important they were for him. Eli needed to hear all this from Dr. W.

Dr. W wsn’t concerned with the floaters. Eli’s retina is not detaching anywhere and everything else looked fine. He explained that Eli’s eyes could be stressed and the brain reacts this way.

We will be heading back down to the UW hospital at some point, for more testing. Basically, Dr. W would like to do two more tests that will give us  a more specific diagnosis. However, we will hold off until Eli is comfortable.

I will also have to take PooWee in for an exam to see if he is carrying this as well. We are going to wait until he is about 2 or even 3 years old. If PooWee has it, it means it’s in my family. We currently don’t have anybody with visual difficulties like Eli, so we just figured it came from his dad’s side.

Hopefully, Eli and I get to his blog this week. So far he had picked out his theme. He went with one that has a black background. He actually sees words better when they are white and the background is black. It’s hard on my eyes, but it’s not my blog!

-Andrew is headed to Spain on Fri. Lucky kid!!! His father, Mike, is getting married. She’s a sweet thing! She’s from Spain and wants to get married in her mother’s home town. Mike is so funny…I mentioned to him, on having more kids. (he only has Andrew.) He said OH NO!!! I reminded him how much his fiance LOVES kids. Then he replies, “Well, it better happen in the next two years then!” Mike and his lady have just bought a house and Mike is “allowing” his fiance ONE room for a kid!

I’m happy for him. He’s a good guy and I only want to see him happy as well. His fiance is very nice and excepts Andrew. She is even fine with Mike and mine relationship. We have a son together, we will be communicating and she realizes this.

-OH ALMOST FORGOT!!!!

HAPPY BIRTHDAY G-MA MARCY!!!!

Today is my mom’s birthday! She’s 73 years young! We will probably do supper tonight. HHMMM-where should we take her? Eli will want to go someplace that will sing to her and embarrass the bageebeez out of her. We’ll see what we all decide on!

-Monday! Monday is cleaning day,and I must get to it! There’s dishes and laundry and not to mention all the toys that have spread through out the apartment. I loathe cleaning! I’l find anything to stay away from it……like babbling on in my posts!

OK-off to clean!

-WAIT! One more thing…hop over to Judy and send her your words of encouragement as she goes through chemo. She has breast cancer. Her posts show her strength with this battle and I’m sure hearing encouraging words from others will only make her stronger! Thoughts and prayers go out to her from me!

Another random thought post

I took Coco’s advice and have started a blog for April’s shower.

April’s friend’s mother is hosting a shower for her, but I thought I’d still have one for her too. There are so many of you that want to help and well, obviously, you won’t be traveling up to Wisconsin for a shower.

Currently, she is doing well. Her belly is starting show, cute lil thing too!

Her parent’s are divorced (which I didn’t realize), she will be living with her father. I ran into them at the store the other day. We talked for a few minutes. He appears to be somewhat nervous of the whole situation, which is understandable. I’m sure he isn’t sure how to go about everything. I told them I was there for anything they needed, just to let me know how I can help. I find him to be maybe even scared. Here too, I can completely understand. I’m sure he is just overwhelmed on what all to get, how to help his daughter, and with just all the normal baby stuff. I invited them to stop over at my place sometime so we could talk again.

I want to ask her Mag’s reaction when she told her she was going to parent. I am so curious to know. Has Mag offered her assistance in finding resources for her? Or has she just left April on her own. I would hope that Mag would help too.

I’ve been wondering why Mag hasn’t contacted me in some time. Normally, she just calls to see how we are. It’s been a few months since I last talked with her. I have a hunch she has written me off because of April’s decision to parent, there for blaming me for losing business. I pray that isn’t the case. Maybe I’ll even get the guts up to call Mag to see how she is doing.

I wish my camera wasn’t broke, I’d love to post a picture of the pretty pink cabled sweater I am knitting for April’s daughter. I’m just so excited to be knitting in PINK! It’s darling!

Speaking of pics, some may have noticed I have taken the pics of the boys off. Remember way back when I had someone close to me mess with me on a forum. (I could link to it, but am just too lazy at the moment.) Well, this person is linking to my photos and all too now. I don’t want to go into details, but I so realize why many choose not to post pics and all. I loved showing off my beautiful boys, but I won’t be doing that anymore. I’ll probably make password posts for those times I can’t resist the urge to show them off.

Well, time is going away on me, I must get my dishes done before getting the boys from school. Then tonight Elijah and I will be starting a blog for him. He has started emailing other visually impaired kids and I think a blog will be a nice way for him to stay in touch with them. And he should have fun with it too! Gee, do you think I can handle 3 blogs?

IEP Meeting

I had an Individualized Education Program (IEP) meeting today with Elijah’s Visually Impaired (VI) teacher, classroom teacher and principal this morning.

All went well. I was incorrect in saying that the VI teacher was suppose to see him weekly. I guess the plan was weekly for one month then once a month. She ended up seeing him weekly for 2 1/2 months and then went to weekly. However, missed a few visits due to illness and a conference.

The mobility specialist hasn’t seen him for a few months due to surgery, but is coming back tomorrow.

Still, all agreed that Eli has missed enough visits. The VI teacher suggested that she come twice a month for now on.

There were many concerns brought up and not just by myself. Principal B is concerned of possible depression. Makes me wonder as well.

Eli is beginning to see what they call “floaters”. These are best described as little spots in the visual field. Maybe like a dust bunny floating in the air. He refuses to talk about them and gets mad if I mention them. I found out last week. I had noticed him looking off into the distance like and swaying his head back and forth. He says, he has the big spots eat the little spots, like a video game. But, when I want to discuss it he gets angry, he denies it with G-ma or anyone else. We feel that maybe he thinks if he doesn’t “admit” to it, his vision won’t change. I made an eye appointment for him on the 22nd. I pray things have not gotten worse. The doctor didn’t anticipate his vision deteriorating anymore.

Eli has also started refusing to use his visual aids at school He doesn’t use his CCTV, magnifiers, nor his monocular. He’ll tell his teacher, Ms. S that he is fine. Then a while later she notices he will have his eyes closed and he states that his eyes are sore and he is just resting them. Ms S said he still stays focused on listening though. She has noticed he has really learned to use his ears. (Can I have some of that at home?)

Ms S and I discussed him not working up to his potential. I have really started noticing this too. His spelling, for one is driving me bazurk! He is spelling, I hate to say this, but his spelling has gotten HORRIBLE! He is misspelling words I taught him in 1 st grade! (Now in 3rd) He is rushing through his work. He tends to take longer, because of needing to look closer and longer at things. Well, I think he rushes to keep up with his peers. He wants to finish when they do. This of course has him making many mistakes. He admits to being in a hurry. He told me he wants to get it all done at school so he doesn’t have to bring it home.

We discussed how all of us need to get him to except his diagnosis. He needs to understand how his life will never be like his peers. He is disabled, and needs to learn how to take his disability and live his life.

I almost broke down and cried. I feel so bad for him. I want so much to give him my eyes. I want him to see the world as his peers do. I thought he was so strong and brave through all this. Perhaps, he was strong and brave for me. Perhaps he has hidden his fears and sorrow to reassure me that he was fine.

Monday Morning Ranting

I’ve grown balls! I just left a message with Elijah’s school principal to call me. I am going to request an IEP meeting. (Individualized Education Program) Elijah is in IEP because he meets special educational needs with his vision.

I pulled out my papers this weekend and the school is NOT fulfilling all they said they would.

Here’s what I THINK is going on. The school district IS NOT agreeing to a contract.  I’m starting to think Elijah’s VI teacher is involved with this. However, I’m not going to let Eli’s educational needs be affected ANYMORE.

According to my papers, he should have an enlargement program set up in the computer lab for him. NOPE-he struggles with sitting on his knees and has his face to the screen. Elijah is the first visually impaired student his teacher has ever had and it’s very apparent. I think his teacher needs to review his documents and start working on a few things as well. She shouldn’t be using the chalkboard, but instead a white board (dry erase) with dark colored markers for high contrast for Eli to see. This will not affect the other children’s learning either. Does it matter if they see something on a chalkboard instead of a white board? When she is using the overhead. Eli should be given his own copy of what she is discussing. This doesn’t happen, instead he can’t see what’s being discussed and he just listens. His work is not being enlarged all the time. He’ll bring homework home and I rewrite it in permanent marker and larger for him. This can be very time consuming and frustrating at times. Ever re-write 100 math problems including 10 story problems? IT SUCKED! When all they had to do was stick it in the copier and enlarge the font!

I sent an email to his VI teacher on 10-10 asking for an update on Eli. I’ve gotten no response. She did email me with a yahoo group that a parent set up for Wisconsin parents of visually impaired children.  Which I’m loving and they have been the ones that have given me the courage to do some “barking”.

I also got information on a braille class I can take for FREE through the Hadley School For the Blind. I am thinking about teaching Eli Braille. He doesn’t necessarily NEED it, but I think it will benefit his self esteem. He struggles with reading at a fluent pace. He has to focus so much on each individual letter that it affects his speed. He will probably never read as fast as his peers. Kids are already picking on him about it in 3rd grade, think of what high school will be like for him. So, if he can learn Braille and read faster, he wouldn’t be so hard on himself. Currently, he says. “I suck at reading!” He AWESOME at reading, he’s just not fluent.

I believe it will be up to me to teach him the Braille because his IEP papers say he doesn’t NEED Braille at this time. His VI teacher said he may in the future, but currently he is able to see words. Eli is interested in learning it to, so why not. I’m kinda freaked though, what if I don’t understand it? Guess all I can do is give it a try.

I’m also looking at having some type of fund raiser for Eli’s CCTV for at home. The Lions group still has yet to get back to me on assisted funds. I’m told I have to “keep on them”, I’m just so sick of phone calls and all. I figure I might as well just do it myself. It’s been almost 1 year already! So, I’m thinking about getting my butt a knitting, and knitting and trying to sell some stuff. It will take awhile, but that’s all I can think of. I’d rather spend my time knitting then talking on the phone having another “useless” conversation on Elijah’s visual needs. I should just record myself discussion his needs. his diagnosis, what equipment we’re looking at, etc.

Alright, enough venting Now, Ms B call me back, I’m ready to ”bark”, nicely of course.