Functional Vision Assessment, learning Braille and First Penance !

Well Spring is in the air and the flowers are blooming.  It has been a slow start to the year with doctor's appointments and I'm NOT complaining!  We did get the results of the Functional Vision Assessment for Cole, however.  This was a battery of tests performed by his Teacher of the Visually Impaired (TVI) and a representative from the Department of the Blind and Visually Impaired (DBVI).  The outcome of that assessment is that the optimal font size for Cole to be able to access his education is 28 point font.

Currently, most print is larger because he is in Kindergarten so he isn't experiencing a great deal of eye strain.  The concern increases, however, as books have more words and less pictures, have smaller font, and the classwork increases around third and fourth grade. There are services that provide "large print books" but it really is a misnomer.  Actual printed books can only be printed up to 18pt font and they are apparently so big they are cumbersome and difficult to hold to read.  We will be able to get his books electronically so that with the use of monitors the font can be increased for reading on a computer, but the concern is that with increased size comes more right-left scrolling which could decreased comprehension.  The concern is that his eyes will strain to read and he will start to fall behind in classes.  Currently he has content magnified on his already large monitor to 150-300% depending on the size of the text to begin with.

So we had an IEP amendment meeting this week to add Braille to his curriculum, not as his only learning method, but as a dual media. So he will now be expected to learn like sighted kids and like kids without sight.  If he were to learn only Braille, he would not be taught to write.  So we decided as a team that he needs to learn both.  Although nervous about this new path on our journey, I know it can't hurt to have more options if the day comes that he is struggling to keep up with his classwork.

Given it takes most people three to four years to learn Braille, I also requested he be provided summer school (Extended School Year or ESY) to get a foundation before classes start in the Fall.  He was approved, but unfortunately they can't provide more hours than they provide during the school year.  So he will have 1.5 hours per week during the four week summer school.

We have also enrolled him in the Braille Enrichment for Literacy and Learning (BELL) Academy through the National Federation of the Blind.  This is a two week summer camp for children with visual impairments.  They will do crafts, games and other projects to learn Braille and learn how to use touch to navigate their environment.  Although I know he will be in good hands, it will be very exhausting for him.  It starts at the beginning of August in Arlington for 6 hours every day.

Although this news is discouraging to me, we are so blessed the option is available.  I expect 20 years ago there may not have been this option at his school and he may have had to get bussed to another location.  I know it's just another way to give Cole everything he needs to succeed, but it does break my heart.  I've started talking to him about it and preparing him. I told him it's like a secret Ninja decoder language that not everybody gets to learn.  Only extra special, lucky kids.  It's all about the spin and perspective right?  In order to get started, we borrowed some of Reagan's lacrosse balls and a cupcake pan (and a printed cheat sheet) and started learning letters.  Over the weekend Cole learned to spell his name and started to master the alphabet.  We were at church last week for Ash Wednesday and he looked up and asked, "Mom, in Heaven will I be able to see like everyone else and not have to wear my glasses."  I said, "yes honey."  And he said, "Mommy, don't be mad, but I really can't wait to go to Heaven."  As my eyes welled with tears I gave him a big hug and thanked God He chose this little boy to be in my life.  His sweet mind and caring heart will carry him far.  He also asked me recently, "Mom, if we don't take our body to Heaven then where do angels put their wings?"  You have to admit, he asks some good questions!

Reagan also had a big week receiving the Sacrament of Reconciliation and getting her First Penance.  She was very nervous to tell the priest about all her sins.  But she did a really nice job (or at least that's what she said).  So next up is First Communion for her in May!  She is very excited to start receiving communion!

Next up...Reagan's EEG in April and hopefully a fun Spring Break trip!