CLVE

Clinical Low Vision Evaluation. 

That is what we did the week we were getting better from the Flu. And the truth is, it was NOT very fun and I left feeling so down that I spent part of the evening in my bed crying.

So the CLVE was set up through the Foundation for Blind Children of Arizona. We went to a location that was LOADED with as many snow birds as could fit in one location. They were all trying on canes, and getting equipment and stuff for the Macular degeneration and glaucoma. Instead of books to read, they had CCTV’s available so you could read the magazines that were left on the counter. The wall was filled with AS SEEN ON TV keyboards. It was a blind persons dream.

Ty was totally cool with the CCTV’s and we read a few books we brought with us. I filled out the countless pages of paper work and his vision teacher came to met us. Her name is Jenny. Tyler calls her Jenny the Pirate.

To make sure that Ty was at the top of his participating game, we kept him home from school. He had only gone on Wednesday and Thursday because of the flu. Ty had a low low key day, and he was properly bribed to participate.

So what is a CLVE, well we sure as heck didn’t know. So this is what we learned.

1. Intense background and medical history of the patient. In this case we actually struggled to get our doctors in Utah to provide us with a detail of ANYTHING. They just switched doctors and it was a real struggle so we went off the last detailed list of stuff that I had sent to school. Which in fact, was NOT what I had actually sent to school but lesson learned for me. Keep a better record. 
2. Depth perception, color testing, contrast of color, light sensitivity, ability to process what they see. While that seems like a lot, most can be done in a series of a few tests.  He did really well and they were very hard for him to do. When things get hard for him, he does a few things that signal to me that we are going to meltdown soon. 
3. Eye exam with the big chart. Ty does really well with these. He did what he could and then the sadness and meltdowns came into play. 
4. A lot of the rest of the appointment was what was Tyler like in a school setting, home setting, a situational setting. This is where it gets more and more frustrating for me as the mom. They also talk about future goals, things that will be happening and things that won’t be happening. Things that we can see as progression and things we can see as he gets older and things that we can expect as he gets older. 

The purpose of the CLVE was to get a specific piece of equipment that can go with Tyler throughout school. It will enlarge his papers, allow him to write, and also allows the computer to help him read when his eyes are to tired to continue to do so. Right now, he is minimal things that require long term memory to read, so it isn’t as much of an issue. But later in life, it will be. Especially when chapter books and texts books come into play. For now he needs basics, but he needs something basic and then some. 

Ty will be getting a Davinci CCTV for his class and it should follow him through school at the district. We are pretty impressed with the Davinci and really like it. It has way more features than he needs right this second in time but as he grows older he will need what it has to offer. 

We have found he has a severe sensitivity to light and should be wearing sunglasses, but transition lenses don’t come in his prescription and getting him to willingly change into sunglasses is a joke. And because his vision is crappy even with correction, he fights us to even wear those. 

His eye sight with correction is still really bad. He is known to have about 20/500 vision. That is REALLY bad. The picture below is what he sees even with correction. 

For now we work with Jenny, the pirate, Tyler’s vision teacher. She helps everyone enlarge everything and make sure that it is in the size he needs and how to help him do better. 

Ty doesn’t notice he can’t see, He pretends he can. People don’t realize he can’t see. We are trying to accommodate him in every way possible and to help others adapt to him in whatever way possible. My calling at church is his teacher, which has opened up a dialogue with the Church’s disabilities department to get some better visual impairment products and books. We are also trying to figure out what we can do to provide him with the stuff we need here at home. 

So don’t get to alarmed when he doesn’t know who you are or he wants to touch you or comes up really close. He is super smart and will remember who you are. He is also learning to get to the park on his bike with no help ( of course he won’t ever be able to go without someone following him because he can’t see cars coming down the street!) but he is doing really well navigating in a world that was not meant to be seen in the dark. 

Kindergarten IEP

As of this week, we have officially IEP and transitioned into Kindergarten. School is still going on for a few more weeks but I had requested in his original IEP to have a review to make sure his goals were hard enough that he can be as "caught up" as possible come kindergarten.

Cognitively and academically Ty is doing very well. He is what they would consider "ready" for kindergarten. He doesn't struggle with learning and wanting to learn and he has a lot of motivation being around other kids. He is even reading about 50 sight words at 100 percent. His Vision dude, Brandon, has worked really hard to get him to that point. He is doing well.

He will be in a transitional kindergarten, which is "normal" curriculum for kindergarten in a setting that is smaller and includes his therapy in the routine of the school day. That way he won't be missing part of his day to leave for therapy. It also means he doesn't have to get mad because he is away from the kids!

He does struggle with Physical things. He has officially graduated from actual PT and is just getting adaptive PE. He still have goals that he has to reach but because he is actually "functional" and can get around the classroom that is all they legally have to work for. It doesn't matter that he might have to have adaptive equipment to get around the classroom once they show they can maneuver the state is GONE. ( Awesome system)

OT is another area. He is FINALLY making purposeful movements to start writing. He scribbles in the same direction as a line drawn but it is really hard for him to have control of his fine motor skills so he gets mad fast. His goals are hard for him next year in OT. The OT did comment how amazing it has been in the last 2 years to see Ty going from NO words to full on conversations that they understand 100 percent. He even starts the conversation, is polite and is a very funny kid. ( Who knew!)

Speech is still going to be on going. He struggles with some phonetics. He puts his mouth in the wrong place on a few sounds and he still breathes in on some sounds. But while he is going a mile a minute in what he has to say you don't notice until you really listen. But he is doing really well and we just added a few goals to get that done.

Vision is our biggest hurdle. Weird that we really don't notice. I think because our awesome vision lady at the start ( Aften!) taught us to bring his world to him. So we did. Outside his world it isn't "blind" friendly. Brandon is working really hard at getting him able to read. He will have a few devices that he will be able to use to help him see his books better and he will be using an Ipad on a regular basis. They are also planning on using and starting the starter set of braille with him.

We have a lot of really hard things planned for him next year but he is doing really well and he LIKES school. He loves it really. We just want it to be as easy as possible so he continues to like it.

We thought it was a fluke.....

But it isn't.

TYLER CAN READ!!!!

I know, I know.. ya right. BUT..... I am not kidding. For real, he can read WORDS.

During the summer we jokingly started writing things on the sidewalk like mom, cat, dad, dog, Tyler. Ty could tell what the word was with no help. We tried again a few other times and moved on to his chalk board. Once again, he got it right.

When school started I told Brandon, our vision dude, that we had experimented with some words with Tyler and he seemed to get them right. Brandon was super excited. He showed us a little thing that he was going to use with Tyler, along with some programs on the IPAD and we wrote down our goals.

Tyler has been able to spell his name for a long time and point it out on a page of names and letters. He can't write it because of his OT issues but he can point out his name. We aren't sure what we are going to do for next year but, HE CAN READ!!

A few weeks ago we got a little index card with a bunch of words and a small note on the back that said " Words Tyler can read at 100%." I had to drop Tyler off at school ( and pick him up early) a few times the last few weeks and I was talking with his sweet teacher. She said that it was some what creepy that Tyler can read. She said at first everyone thought it was a joke but she said his list has grown... A LOT. She said she was getting a list from Brandon to send home.

So.... wanna know what he can read:

Tyler, cat, dog, play, love, I, like, Yes, no, Stop, more, help, home, go, ball, car, mom, dad,

He reads: I like Red, yellow, orange, green, ball, car, cat, dog.

I love mom, dad, play.

They are working on Hat, blue, brown, black and pink.

He loves books. He loves them so much that he would spend all day reciting the book you read him a million times over. We are so proud of him. He is really smart. Now that he is a talking pro we KNOW how smart he it.

When he does something that is very "smart" and we answer that he is right. He says " That's right Tywer. Your so smart!" And he is.

So.... Tyler can read. In the words of Miss Holly. Tyler is doing so AWESOME and we LOVE Tyler.