Showing posts with label My Personal Thoughts on Vision. Show all posts
Showing posts with label My Personal Thoughts on Vision. Show all posts

Monday, March 16, 2009

My own IEP letter, what I want for Frankie

Frankie was born in May of 2006, greeted by myself, my husband and big sister Lizzy. It was not until he was about 4 months old that I started to notice his poor vision. I realized he could not track objects. A stuffed animal fell towards his face and he did not even blink. We took him to the eye doctor, and a diagnosis of ocular cutaneous albinism was given. I watched as he did not respond to any flashlights or objects. We were told he knew us by our voices, not our faces.

Frankie will turn three on May 4. There are a few reasons why I feel he would benefit from an IEP and services in the Westwood Integrated Preschool. He recently was diagnosed as being legally blind. He gets around so well in familiar places, is it sometimes easy to forget his vision impairment. He also is cognitively proficient, in things that do not require vision to learn. An example; he knows how to count to 12, sing many songs and has been potty trained since 2.7, yet he does not know his colors well, has trouble with busy puzzles and cannot always identify the food on his plate.

My first concern is the classroom setup and teaching methods. He will not be able to see a book or item that a teacher is holding up in front of the classroom. He will listen, not seeing what is going on, for just so long, then he loses interest and fidgets, gets up, etc. He will need a lot of adaptations so that he can get the most out of these types of lessons and circle time in the class. The classroom also needs to be set up the same way, so that he gets used to it, with his seat facing away from the window.

He does not see a great deal of what is happening in the classroom. If he drops something on the floor, he has a really hard time locating and finding it. Things with similar colors blend together and he has a harder time picking something out. He would not easily be able to recognize someone or something across the room. At early intervention class the other week, I told him there were bowling pins, but he could not see them across the room, and was asking where they were. I feel that a Teacher of the Visually Impaired would be beneficial to Frankie in the classroom, as well as the teachers.

He also needs extra help learning things at a close range. He has trouble pointing out animals and objects in books. For many animals, he will say it’s a sheep. He gets very close to a picture, to see it.

An orientation and mobility specialist would also benefit Frankie. He trips over toys, small obstacles or door jams in his way. In new surroundings, Frankie may trip and be hesitant to explore. He has trouble with stairs, and he can be very slow and cautious. At a familiar playground, he has trouble finding other pieces of equipment, if they are far away. On apparatus at unfamiliar playgrounds, he will sometimes stop and put his hand down, and shuffle very slowly.

My last concern is the sun sensitivity that goes along with albinism. He needs sunglasses and a hat while outside and should not be in the sun for long periods of time. Any extra shade on the playground would be beneficial to Frankie, as the sun makes it harder for him to see.

As there are special education teachers already at the Integrated Preschool, it seems like a great place for Frankie to get the services he needs. I have 2 other examples of how hard things can be for him with his vision limitations. He didn't know his EI teacher (whom he has known for 2 1/2 years) when she had a hoarse voice. He kept asking me if that was really her! He was with my parents and my mother took him to our bathroom, and he was asking her if they were in our bathroom or theirs. He could not distinguish where he was.


Thursday, February 19, 2009

Relying on Hearing

Today Frankie's EI teacher came and she had a hoarse voice from a cold. I told him she was coming and she came in and said hi. She was talking to me for a minute and and he kept asking me, "Is that Ms. R"? He wasn't sure because her voice sounded different and I guess he really does not see faces that clearly. We do not realize how much he relies on his hearing and tells people by their voices. It was just surprising to me.
I am still thinking about his legally blind status too. I got something from the MA Commission for the Blind in the mail today because he is registered as a legally blind person in MA. I have not had a chance to read it, but I am still getting used to it and it is still sinking in, I think.

Thursday, November 6, 2008

My Election Thoughts; as Pertaining to Frankie

I voted for life in this election, something that is very important to me. I have always been pro-life and I have felt strongly about it. But now, having a special needs child, it is even more of an issue for me. To think that someone would abort a baby because it has albinism, really makes me sick. Because of this, I needed to vote for life.
So needless to say, I am a little sad from election day. I feel that the unborn will be treated with less respect than before. This makes me sad, and it is hard to explain about having a child with special needs, but it makes it even sadder.
I do hope that one day unborn children will be treated with more respect. And that people of difference in general are treated fairly.

Monday, September 8, 2008

September 8, 2006

Two years ago, today, Frankie was diagnosed with albinism. It was one of the most shocking days I have been through. It is amazing how much had happened in these 2 years and how different Frankie is today! He is doing so well, it amazes me. He had his EI class today, he was happy to go and fine when I left. He was so excited when I came back to show me his picture of a bus. : )
Last year I felt a little sad when the fall came, because that was when he was diagnosed and I felt as if I was going back to that day. But this year I feel so much better!

Monday, August 11, 2008

Auditory vs Visual

Today while Frankie was at "school", we did a project in the parent group. It was called a "First, Then" board. We laminated paper, the first half has a "First", the second half has a "Then". At home, you could use this with your child and velcro on pictures. Under "first" you could have a picture of cleaning the toys, and under "then" a picture of having a snack. So the "first" is an unpreferred activity, and the "then" is the preferred activity. It sounds like a good idea to teach children to do certain things that they may not want to. And they can have warning about what is coming next.
When I was making it, I was thinking that is sounded like a good idea, but Frankie is quite good about doing something willingly before his preferred activity. The other mom in the group with a visually impaired child said she might want to get a bigger font for the words. It then dawned on me, that yes, the words were too small and that Frankie does not learn things easily visually! He is smart and most of the things he knows he has learned through listening. He is an auditory learner. This got me thinking about how there is so much learning that is taught visually, and I need to make sure Frankie gets to learn how he does best!

Wednesday, July 23, 2008

Reasons for an IEP

Frankie will be 2 1/2 in November and we will start the transition/IEP process. I want him to get an IEP for a number of reasons. I am just going to list them so I can remember them and refer back.

He has trouble pointing out things/animals etc. in books.
All animals are a sheep to him.
He has trouble with stairs.
New surroundings make for more of a chance to trip and he does not want to explore as much.
He trips over the bottom of door jams.
He sometimes does not know his milk is there when it is right in front of him.
He cannot see a storybook when it is held by a teacher at the front of the room, even when he is sitting on the floor right in front of her and she is in a chair.
He needs his sunglasses and hat while outside and should not be in the sun for long periods of time.
He has trouble stacking small blocks.
Things with similar colors blend together and he has a harder time picking something out.
He would not easily be able to recognize someone across the room.
At a familiar playground, has trouble locating other pieces of playground equipment, if they are far away.
At some unfamiliar playgrounds, has trouble walking across them; will stop and put his hand down, shuffle very slowly.

Frankie is doing really well, but I still think he would benefit from an IEP, at least in the beginning so he can get the best start, that he deserves.

Monday, March 31, 2008

"Don't Sweat the Small Stuff"

A year and a half ago, we found out Frankie had albinism, and everything changed. Now, I am happier that I was before the diagnosis, but life will never be exactly the same. Going through an event like that is life changing and I find myself looking at things differently than I used too.
As an example, my car was totaled this past November, we were unharmed! Then about a month ago, my brand new mini van was hit parked in font of my house. I just got it back on Friday! Around the time I totaled the first car, I broke my computer, fell down the stairs and my grandparents were both in the hospital. If this would have all happened the fall Frankie was diagnosed, I would not have been able to handle it. But now I was able to put most of it in perspective. The main issue with the car was that we OK, and we were! It was a pain to make many phone calls, have a rental, etc, but it wasn't what really mattered and it wasn't all that important. Now we even joke about our bad luck with cars. : ) A car, computer or any material object can be fixed or replaced. My fall was not that bad and my grandparents are both at home.
So Frankie having albinism has changed me, but definitely for the better. I can actually relate to "don't sweat the small stuff". Sometimes I still do sweat the small stuff, but not nearly as often. When I do, I find myself looking as the situation again and asking if it really deserves this much attention or worry. Usually it doesn't.
I'm sure there are others out there who can relate?

Wednesday, March 5, 2008

Random Thoughts on Frankie

I was just jotting down thoughts about Frankie and decided to come up with this poem. : )

Full of life, he loves to
Run and meet Lizzy at the door.
Albinism he has, but his eyesight does not slow him down.
Nightly he loves to sleep with Curious George.
Kitchen sets, and pretend cooking are fun for him.
Ice cream is a favorite treat.
Everyone loves Frankie!

Frankie is full of life, even with his albinism, his eyesight does not slow him down. He loves to be outside, wearing his many hats. Curious George is his favorite toy, along with monkeys, bananas, kitchen set, books, trucks, balls, songs, sheep and anything Lizzy has! He is mind-mannered and gets interested in what he is doing. He is well loved!
Maybe I will try rambling about Lizzy tomorrow. : )

Saturday, March 1, 2008

How far does Frankie see?

I have been doing a lot of thinking about how far Frankie sees, compared to other children his age. His vision is improving, but I am still not sure how far he can see. If he sits on the couch, which is about 8-10 feet from the TV, he does not see the TV well. He will get up and sit on the ottoman that is right in front of it. So I am pretty sure he does not see that far, clearly.
He is able to chase a ball across the room and find it, but he can probably do that without the ball looking perfectly clear. So I am trying to figure this out, I really want to know "how" Frankie sees, but I guess I will know more as he gets older and can tell me!
It is interesting, too, because I find myself thinking that other babies cannot see me from across the table. When Frankie was a baby, he definetely could not see us if we were not right next to him, and even then, I'm not sure.
But other babies, say 5 months or so, can see me across the table. I find myself smiling at them, thinking that they will not see me, and then realizing that they do, because they smile! It is just interesting to see how we bring our experiences with us and they impact future situations.