20/200

Frankie went for a low vision evaluation today at the Perkins low vision clinic. They used the Lea pictures at a distance and up close, and his acuity came out to 20/200. I am still a little shocked. I knew when he is usually tested with the teller cards, the acuity of 20/60 was better than he really was, but now I know that he is actually legally blind. So I am still digesting it and trying to get a handle on it.
It may help us as we navigate the IEP process, getting him into the integrated preschool. I would think a child who is legally blind should get an IEP and services.

Transistion/ IEP class

We were to stat our transition/ IEP class today at Perkins, but could not because of the snow and ice. I was looking forward to getting more info on the process, specifically related to vision. I feel the more information the better! More to follow next week.
I dropped off Frankie's paperwork at our integrated preschool yesterday, now waiting to sign and set up assessments for him in the next month or 2. I am going to have an OT, PT, mobility and vision assessments for him.

Frankie's 2 year Evaluation, Part 2

This past Wednesday, Frankie's EI teacher, another teacher and his TVI, all came to discuss his evaluation and ways to move forward to help him. He scored quite well on his evaluation, with his speech and cognition almost that of a 3 year old. He was low is gross motor. So we all made a plan together of areas to work on, gross motor being one. We also discussed helping him learn shapes, colors and distinguishing animals in a book. I felt it was very productive. We also scheduled the first IEP meeting for November, where I will learn all about the process. I am excited and nervous!

Perkins Albinism Class

I have written some about the class at Perkins, but wanted to mention all the rest of the great things we did and learned. On the last day of class, (everyone was sad to see it end!), we did a sunblock experiment. We put sunblock in between transparent paper. We then went into a dark room and put photo paper under the transparent paper. We then went into the sun for a few minutes and came back inside to lift off the transparent paper with sunblock. You could see how much the sunblock protected, because the paper was not exposed. I used the Aveeno Baby sunblock and it protected quite well, judging from the experiment. I have been using it all season and it works great and does not irritate the skin.
We also got to test out some of the low vision aids. We got to try hand held magnifiers and ones mounted on glasses. I am going to call this week to the low vision clinic at Perkins to get an appointment for Frankie. That will be quite interesting to me.
There is also a workshop at Perkins where all kinds of devices are made to help blind and vision impaired children. The slant boards were very nice, it is a desk that is slanted at a 45 degree angle so the child does not have to strain their neck over so much to look at or read something. It is made from a type of cardboard, so it is lightweight too.
Overall, I do love the albinism class!

Thank you, Rick!

I did get to see Rick Guidotti last week at Perkins. So inspiring how he goes around the world promoting difference as beautiful!

Thank you Rick for seeing the beauty in everyone! For being so full of energy, enthusiasm and
kindness. Your warmth and love towards others is apparent immediately and lights up a room. As soon as we saw you last week, you immediately remembered us and talked to Frankie. We need more people in the world like you and working as hard as you do to promote goodness and harmony among so many different people. Thank you!

Celebrating Difference

Rick Guidotti, of Positive Exposure, received a humanitarian award on Thursday, May 15th, 2008, In NYC. My parents had the pleasure of going last night and meeting Rick for the first time. He is such a wonderful, caring person, who does such good for others. He is an inspiration and a fun person to meet. He is so full of energy! Of course, they were excited to meet him and my mom called me first thing this morning. He remembered meeting Frankie and Lizzy last year at Perkins and has some great pictures he took of them.
My parents met some other wonderful people who had children with albinism, or who had it themselves. My mom has emails from all of them to give to me, so I can chat with them and ask any questions. She expressed how nice everyone was and how welcoming!
I am really excited to see Rick again at Perkins in a few weeks!

Albinism Group!!

Today was the first day of the albinism group that we will go to for the next 7 weeks at Perkins School for the Blind. I am so excited about it. We went last year and loved it!! Today myself, 4 other moms and dads and the facilitator talked and got to know one and other and each others children. It is always nice to meet others in the same situation. Everyone had older children, 2 of the parents had an older child with albinism, which is a nice perspective to have. I am looking forward to the coming weeks and all the great speakers that are coming.
Frankie did pretty well separating. He was upset at first, but his TVI and another lady distracted him with some fun gross motor activities. He then had so much fun he didn't even want to stop for snack! : )