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. =)