October 11th

Samantha gave a braille presentation in her class. It's long, sorry! =)

Braille Challenge

The girls had their Braille Challenge today. I dropped them off at 9:00am at the blind center and then came back to see what they earned at about 2:00 pm. Samantha and Tori were AWESOME! They got along and had a great time after their testing.

Tori received 1st place in Braille Spelling in her group, and 2nd place in Reading Comprehension in her group.

Samantha got two Honorable Mentions in Braille Spelling and Reading Comprehension in her group.

They have learned so much over this year it's amazing. We also were able to pick up a lot of free Braille books. And let me tell you those puppies aren't cheep! =)

There were quite a few NEWS crews here are the links to their stories that I've found so far. Their was actually video cameras there so if I find a news report on it I'll post it at another time.

http://www.deseretnews.com/article/705368061/Braille-competition-encourages-literacy.html

http://rosepark.fox13now.com/news/arts-culture/utah-regional-braille-challenge/49674

Louis Braille Prensentation

The girls got to give a presentation on Louis Braille today. One of the first grade teacher asked Marcia to introduce her students to Braille, since they had been reading about Helen Keller. The girls did so well, I am such a proud Mom!!!

Tori's Reading

Tori has been learning to read Braille for some time now. She is learning Contracted Braille, and is now advancing her speed. I spoke to a wonderful lady, who just happens to be a friend's Mother. She also just happens to be blind. She asked me what Tori's reading speed was, to which I had no answer. So at the girls last evaluation I asked. Tori was just about 10 wpm. Marcia wants Tori to be about 80wpm by the end of the year. So I have started figuring her wpm, everyday. Last night she read 14.6 wpm. Seems slow, but any progress is good!!! We will continue to encourage and help as she and Samantha need.

Braille Camp

Braille Challenge

The girls got to go to the Braille Challenge today. We went to the Blind Center and they divided them into groups. The girls were in the apprentice group together. I followed them to the room they were doing the challenge in, and gave them both a kiss and then went back to the Mulit-purpose room.

Tori says first they did Spelling, then they did some Proof Reading and correction.

While they were in their I got to have a nice chat with the parents of some of the kids.

They apparently had enough kids in the apprentice group that they split it into younger and older kids.

Tori got 2nd place in proof reading, and 3rd place in spelling.

Samantha got 2nd place in spelling.

After they got their awards and we were getting ready to leave.

Marcia is their Vision Impaired Teacher
We got to eat Pizza. Samantha's favorite part.
They gave them each these cute bags at the beginning.
Samantha with her Braille writer.

Reading Braille

I can't tell you how excited I was last night when helping the girls with their Braille homework. Marcia put on the tracking page READ, in Braille and handwritten above for my benefit. So I had explained that the teacher wanted Samantha to read the words that are associated with the letters that have been Brailled. Samantha looked straight ahead and read me every word. I was so excited for her I had to get Brett in the kitchen to have her do it again.

Of course I made a huge deal out of Samantha's reading, but Tori had 3 or 4 more letters/words and she read everyone of them without hesitation. So of course I had to try it. I missed 3, but Tori enjoyed being the Teacher for a minute. I can't believe how well they are doing!!!

Neither one looked at the page, big step for Sam. Tori has always been really good at sitting straight and looking straight ahead. Sam has always wanted to learn the Braille visually which is not the point. They are both doing amazing and I can't believe how much they have learned with Marcia! Thanks, Marcia!!!

Braille Homework

The girls have Braille homework 4 days a week. It's not too hard. It goes pretty quick, but my Sam has been a little bit of a pill about the homework. Until I got her Multi-colored card stock for the Brailler. Now she loves it!!!!

Love it!!!!

I'm up late listening to a speech given by Carol Castellano at the NFB's National Convention. I've heard so many things that are similar to what she says with my girls and Braille. I'm so excited to find people who agree with Brett and I, and our decision to have the girls learn Braille.

It makes me laugh when I hear the it will be bad for them. How is it bad to learn a different language? Is it bad to teach your kids Spanish, or French? Is it bad to let them take these courses in school? The nice thing with having the connections that we have, is that it has been easy to get the girls set up with the Visually Impaired Teachers.

If you would like to hear this speech click the link below and then toward the bottom of the blog on the right side is FAVORITES. It's listed under there.

Thanks Marla!!!!!!

http://upobc.blogspot.com/2009/07/why-are-you-trying-to-make-that-child.html

Today's craziness

Tori's class has been reading The Wizard of Oz. The idea was to read the book and then watch the movie and see how different they were. They also learned that a book usually has more to it then the movie. For watching the movie they were supposed to dress up like their favorite character. Tori wanted to dress up as Toto..............Uh-huh........

So here is my interpretation of Toto. Notice the lovely green glasses for being in the Emerald City. We also found some flowers that resembled poppies so I went to town with those.

I didn't want to have her wear a collar and leash like she wanted to, so I got her a bandana and wrote TOTO on the bottom. It worked.Then we wove her hair with the remaining "poppies". She has so much hair!!!

Then later this morning I had to attend the girls IEP conferences. If you don't know what that is, it's an Individualized Educational Plan. My sister Kristen watched Jason for me and Samantha got to sit for two of them. First we discussed Tori, and our concerns for her. Miss Palmer came to the conference and Marcia, the vision teacher and IEP fasilitator, ran through everything that Tori will need in the classroom. Since Tori can see ok, there wasn't much to worry about. She just needs to be within 10 ft. of the whiteboard, her papers need to be crisp clean copies, instructions written on the board need to be in print and not cursive. We also discussed that fact that she might struggle with "bubble tests". I told them not to make any changes with this as of yet because I want to see if this is a concern, but I have been told that they could prove difficult in the future. So I've advised them that if she takes a bubble test and it shows a lot of wrong answers to let me know, and then to check to see if this is an accurate representation of what she knows.Marcia did some testing prior to the IEP and she has determined that Tori has some fine depth perception problems, and she has some contrast problems. That would be helped a lot from print and not cursive as well as the clean copies. Obviously sitting in the front of the class is going to be an ongoing need for Tori, not surprising. The one thing she told me that concerned me a little is that Tori's hearing test in one of her ears had to be taken up to 30 DB's. I don't know if she just had a cold or if something more is going on with her. We'll have to do some more testing on her at her next well-check and see if the findings are the same. The loss wasn't bad enough for us to jump on anything as of yet. Tori will be taking Braille classes 4 days a week for 30 minutes a day.

Then it was Samantha's turn. One of the only nice things with the girls is that once one IEP is done both are almost taken care of. Samantha has also had the testing done prior to the IEP conference and she has some fine depth perception problems, but she was unable to do the rest of the testing because she is so young she couldn't complete the tests. My only concern with Samantha is that she falls down a lot. The occupational therapist said that she didn't see any problems with her ability to manuver the classroom, but I advised her that I'd like to have Samantha evaluated out on the play ground. I don't know if she is just being a little girl or if she is really have peripherial vision problems and doesn't have time to look at what she is doing when she is running around. The OT said she would come and watch her at recess sometime soon and let me know what she finds. Samantha will be taking Braille classes twice a week for 20 minutes a day for this year, and 4 days a week for 30 minutes a day next year. With Kindergarten's short schedule it made more sense to have her taught only 2 a week right now.


They sent me home with a Brailler. We can now make raised bumps on paper!!!!! Of course I don't know how to read it so I've gotta throw away all papers that were played with just in case I've typed up some naughty words.

Then my little boy isn't quite so little. Duncan is having his first "real" sleepover with his buddy. By "real" sleepover I mean not at Grandma's house. We'll see how his night goes and whether he is going to come home really grumpy or some what normal.

Starting the Paperwork

Well, the person over the VIT teachers called me in to get the paperwork signed to test the girls. She seems very positive and willing to help. It sounds like the girls will have two teachers, to teach them braille. Tori is stoked and has asked me quite a few times recently when this will start. Samantha isn't quite as excited so we'll see how long she lasts.

Once our paperwork is signed they are legally required to have this going in 45 days. We will be having an IEP meeting sometime in April. Keep you posted.

Vision Specialist at Davis County

The Vision Specialist called today and wanted to get some more info about the girls. She asked me to write their history so that we could go into our meeting prepared. After I typed it up I thought it was interesting so here is what I've got, so far. All I can say is, "Wow". What my girls have gone through so far. Mainly Tori, but who knows what is going to happen in the future.

Tori had her first eye appointment at 3 years old. We went to an ophthalmologist that was unfamiliar with Sticklers Syndrome and when he gave her a prescription for her glasses he was very concerned and wondered if I had had any complications with my pregnancy (which the answer is no!). We then saw Dr. Wing who has worked with my husband's family before. He diagnosed her with Sticklers Syndrome when she was 4 years old. Her prescription at her first appointment was -6.25 in both eyes. Her eyes change every time she has any type of growth. Right now her prescription is -6.75 in the right and -8.75 in the left.

February (?) of last year she had her first retinal surgery. She came to me and said that when she blinked there was something that was in the way. We got her in immediately to her ophthalmologist at Primary Children's Hospital and Dr. Dries advised us that she had a tear in her retina and we would need to have surgery immediately. We then went over to the Moran Eye Center where she met Dr. Bernstein who perfomed the retinal surgery that evening. They performed Cryopexy (freezing of the tear) in her left eye and fixed a Scleral Buckle to help to hold her retina in place as it healed. They also checked her right eye while she was under anesthesia which proved to be starting with some small holes in that retina. They were able to Laser the small holes closed.

November of last year she said she was having problems seeing again, so we took her to the emergency room at Primary Children's Hospital. The on call resident ophthalmologist came in and found some small tears beginning and advised us to keep Tori down until the following Monday when Dr. Bernstein could see her again. She then underwent a full Vitrectomy, where they drain the Vitreous and reseal the tear. They inject a gas bubble in the eye to keep the retina in place as the eye fills up with fluid.

Because of the Vitrectomy she has developed a Cataract. March 26th she will be undergoing Cataract Surgery. As well as another partial Vitrectomy, she has a small amount of Vitreous still in her eye and blood clots which are obstructing her vision.

Samantha was taken to Dr. Dries at Primary Children's Hospital when she was 18 months old. She was diagnosed with Sticklers Syndrome that first visit. Her prescription was -8.75 and has changed as she has grown. At one point her prescription was -10.25 but at the moment she is -8.75 and -9.75. She is undergoing patching in her right eye everyday since her left has always been stronger then her right. It seems to be showing improvement. So far Samantha has not had any Retinal detachments but my husband and I are on constant look out for the first signs of any trauma.

Samantha is constantly covered in bruises on her knees because she falls a lot. She runs into things that are not in within the vision of her glasses. I asked her one day why she has so many bruises on her knees and shins and she said, "Mommy, sometimes I fall down a lot."

Well that's what I have so far for the girls "History". Breaks my heart sometimes but the girls are awesome and resiliant.

Vision Social Worker

I got a phone call from Cinnamon another Social Worker at the Moran Eye Center. She said that because of Tori's age they will have to go through the school district. LOL!! That's exactly what I was looking for. She spoke with the Davis County TVI (Teacher for Visually Impaired, I think) and they will be contacting me soon.

It's not what you know! It's who you know. You just have to find the right channels.

Tori and Samantha

I know I haven't updated this in a while. I was going through a moment of self pity!!!

After much prayer and contemplation, we have started the process of Braille Services for the girls. I have asked everyone that I could think of with similar issues to my girls and the consensus is that it would be beneficial. I think it might be a bit of a fight, but we'll see what happens.

The reason we even thought about this is I met a lady through one of my friends, her name is Marla Palmer. She is on the board of Utah Parents of Blind Children. It's a group for parents with blind children obviously, but also for Children who are visually impaired. She brought the option to my attention after discussing the girls issues with her. She stated that it is better for them to learn Braille now because they are like sponges and they will learn it faster now then when they are even teenagers or adults. She also says that It's a great option for when their eyes get tired. Tori comes home from school some days and it breaks my heart. She has great big circles under her eyes and she has the beginnings of a headache. This is only in 3rd grade. I can't imagine how hard it's going to be when she is in High School or College.

I have always felt that Tori and Samantha are amazing and deal with there vision problems like there is nothing different about them. They are talented, compassionate, intelligent, friendly. I could go on and on. Not once have I considered my kids disabled. Paula from the school for the deaf said to me once, that I had "three kids with disabilities." I laughed, because my kids aren't disabled. But, according to state laws they are. Which means to me, that I'm going to take advantage of every program that I can to benefit my children.

I read an article that stated 70% of blind adults are unemployed and living off the government. http://www.sltrib.com/ci_11604505?IADID=Search-www.sltrib.com-www.sltrib.com Even if this is not completely accurate it hit me! IF something were to happen to Tori or Samantha when they are in college or even older, how are they going to be independent? I know I don't like to rely on parents, I don't think they will want to either. Thus, Braille Services.

The biggest road block will be getting the lady from the district to approve it. But Marla knows a lot and is willing to help me with the Law mumbo jumbo. Also, Lisa who is a cousin and the kids Nurse Practitioner is going to write a letter explaining Sticklers Syndrome and what it entales. We are also going to get a letter from Dr. Dries stating "It's not if it's when they have a retinal detachment." He says that to me every visit!!!

If you are wondering my pushing the Braille when my girls can see, well don't. Tori has had 2 retinal detachment surgeries already. I want my babies to be able to take care of themselves and there own. I don't want to have them come to me one day and say "Why didn't you....?" I pray about what to do with them all the time. I try and stay in constant contact with my Heavenly Father to help me with these kids. I love them and will do the best I can for them. I hope that everyone will be supportive and encourage the girls to do well.

I'll keep you posted on the inner workings of the Davis County School District. =)