Halloween Gerz

We have been enjoying all of the fall festivities that October brings, minus the weather (Currently, at 8:15 pm it is about 85 degrees in our house, with zero humidity and no AC.  It's Santa Ana time again.  Let's hope there are no fires this year.   This month, Audrey enjoyed a trip to the Punkin Patch, pumpkin carving with her teacher Judi, Trick or Treating, Art Projects, and a Halloween Parade at her daycare.  Her social calendar is quickly filling up.  Luckily, we're here to document it all for you! 


For the last three months we have been anxiously awaiting the results of the genetic tests we submitted back in Philly.  We have been told that it will take up to five months to get results assuming she has one of the genes in the Phase 1 test, which includes the most common to LCA (AIPL1, CEP290, CRB1, CRX, GUCY2D, RDH12, RPE65 & RPGRIP1.  We were recently notified that as of last week, her test is in progress.  Hopefully we'll know something soon, but if no gene is identified in this round of testing, we'll then do a second round, which will look for other less frequently occuring genes.  Luckily Audrey doesn't give us much time to twiddle our thumbs.  She's very much on the go, even though she's still not going anywhere. 

Audrey's current interests include swinging, playing with balls, sliding, beads and strings, horsing around with mom and dad, and singing.  She knows a few words now including Dada, Mama, Ata (we think Audrey), and up, and regularly enjoys full blown conversations with mom and dad in her own very special language.   She is finally starting to use some of the signs that I've taught her, which have come with some of her fine motor development, and she is still very versed in getting what she wants through crying.

This morning Judi, Audrey's VI teacher brought another teacher to our house to visit.  Her name is Crystal and she lost her vision when she was nine due to encephalitis.  She was extremely interesting to talk to.  Her biggest advice to us was to treat Audrey just like any other child.  She said that when she was a kid, it seemed to her that her parents didn't know she was blind.  She wanted roller skates and a bike and her parents got them for her, and supported her without being overprotective.    She grew up in South Carolina and went to the state school for the blind there.  She said that she was strongly influenced by her dorm mother who was like a drill Sergeant.  She said that if her clothes weren't properly sorted and put away, she would find them in a heap on her bed and have to fold them all over again.  That sort of tough love really helped shape her into the capable woman that she is today.  She said that being blind didn't seem like a disability to her, and added that "the only thing you really can't do is drive, and who wants to do that anyway." She said that she views it sometimes as a nuisance because everyday things can be more challenging for a blind person than for the average sighted person.  Being extremely organized, which I am not, is going to be of utmost importance for our little Audrey Angel.  I'm going to have to really make an effort to create specific places for everything.  Luckily we have some time. 


Last week we met an orientation and mobility specialist, who will work with Audrey starting after the holidays.  He will introduce Audrey to the white cane initially for her to explore, not so much for mobility.   As many of you know, she's not mobile yet, and probably won't be for a while (although we're steadfastly working on it!!!), but we want her to have exposure to the cane as soon as possible.  Apparently in the O & M world, there are a couple of differing opinions about when the cane should be introduced.  From what I've heard, the "old school" way is to introduce it when the child is around 3.    We're on an LCA Yahoo group and there has recently been some discussion on this issue.  One accomplished and intelligent young lady with LCA who frequently posts said that she didn't learn to walk independently until she was three, when she got her cane.   She said that had she been given her cane at an earlier age, she would have had the confidence to move around earlier.   We decided to  push for that.  Audrey will initially use the cane as a toy, then for tapping different materials and listening to the different sounds things make.  When she goes to preschool and kindergarten, she'll learn more about the cane for mobility, including skills and techniques for getting around.  There's a lot for us to learn about this as well.

Currently, Audrey is standing supported, and is learning to push her self up to sitting.  She's almost there.   Doing these things is more difficult for a blind child, especially since Audrey also has low muscle tone, which is something hat often accompanies LCA.  She's getting stronger and more familiar and confident with her body every day and it's such a joy to witness all of the progress she is making.   Her fat tone continues to be extraordinary.

Okay, enough for now--we're off to the Children's Museum.  I'll post some pics from this month soon!