Education

The information given during the Thursday morning sessions of the conference were primarily related to education. Here were some of the bullets of information that particularly stuck out to me.

1) "75% of what children learn in the early years is processed through their vision."
75%. Yikes, that's a lot. It makes sense though, when you really think about it, and it certainly explains why so many visually impaired children run a little behind on their developmental milestones.

2) They gave some basic guidelines as to how your should stimulate an aniridic's visual system in the first few years of life:
- 1st year - children with aniridia will be easily scared at this age, so be careful how you work with them. Using light boxes (with the light somewhat dimmed) is appropriate.
- 2nd year - exploration of any sort should be encouraged.
- 3rd-5th years - one suggestion was to put your finger on each word as you read it. This can help the child learn that the words on the page are associated with the words you are saying. (This is assuming the child has enough vision to see words, I would presume.)
- 5-8 years old - key is providing the child with an appropriate workstation at school to best use their functional vision. I'm so thankful we'll have April's input to make this happen! One of the suggestions was to make sure that the window in the classroom is directly behind the child, so that the light coming in doesn't cause as much glare. They also recommended having a task light directly overhead to illuminate the items being read.

3) By the end of 3rd grade, a child needs a functional vision assessment - working with a low vision optometrist, the ophthalmologist, and your TVI (teacher for the visually impaired) to help you figure out how to best serve the child and maximize their remaining vision.

4) If needed, you can go to www.familyconnect.org, type in your state, and it will help you figure out what early intervention services are available for your child in your state.

5) Public schools use an IEP (Individualized Education Plan) to lay out the special things that will be done to help educate your child. (In the first 3 years, this is usually referred to as an IFSP, or Individualized Family Services Plan.) An IEP is a legal commitment between you and the school outlining what the school will do for your child. They therefore must uphold their end of the agreement. The IEP is written by an entire team, which consists of the parent, the regular education teacher, a special education teacher (often the TVI), the child when appropriate, and anybody else the parent wants to invite.
- We already have an IFSP that was set up when we started working through the school system in January. Due to my degree in education, I knew that IEPs existed, but since I hadn't dealt with special ed, I really didn't know much about them. I didn't realize they were a legal commitment, although that makes sense now that I think about it.

6) I realized, in listening to other parents, that many of them have experienced great frustration trying to get what they believe their child needs from their school system. I realize that Elli is only 14 months old, so we have a long ways to go, but....I can say that I've been overwhelmed with gratitude for all that they've already done for Elli, and for how overly helpful they've been.