Vision specialist

So with the holidays and everything, I never updated on what happened after the functional vision assessment that Julia had.  When the specialist came to the house, she "played" with Julia and then told me that she recommended that Julia be checked quarterly.  This meant that she would be on "monitor" status.  I am very familiar with "monitor" status because I teach special ed.  In high school, if you are on monitor status, you will be dropped from services after a semester if you don't need the
extra help anymore.

Well, the vision specialist (she works for Delta Gamma), the occupational therapist, and Julia's case manager came to the house to review the functional vision assessment.  There was a lot of discussion and I contributed as much as I could.  It again was very surreal to be the parent in this meeting and not the special education teacher.  The team decided that Julia does need vision services so the vision specialist will be coming to the house once a month to work with her on functional vision.  She also will still receive occupational therapy once a month as well.  The vision specialist/occupational therapist will be working on fine motor skills, scanning, and mobility, especially when it involves depth perception. 

We also talked about how hard it was to keep her glasses on.  At the time (this was back before Christmas) she was still hit or miss with keeping them on.  A goal was put in her IFSP about glasses.  The great news about this is that when she gets her next prescription, First Steps will pay for a set of glasses!  Hooray!  That is definitely great news since she will probably need a new pair shortly after surgery.  Now I won't have to just replace the lenses, but can get her new frames as well.

Some days I swear that Julia can see really well.  I wonder if it is the mom in me wanting the best for my daughter (can we say denial).  Like today, she was picking up nerf darts off the floor, and that was without her glasses!  Other times I notice that she has trouble.  She doesn't use her peripheral vision so she will trip over things on the floor and has a lot of trouble with steps.  She is very, very hesitant to let go of me in an unfamiliar setting. 

I have my moments where I wonder if she really needs these services. The normal person would never know that her vision isn't great.   But then the special educator in me reminds my nagging conscience that First Steps wouldn't have qualified her if she didn't need the help and that preventative services are always more successful than trying to catch up later.

So right now we are just patiently waiting for surgery day.  I had a little tearful moment today when Julia was in the tub.  Without her glasses on, you can really see her eyes.  They are definitely turning more hazel/brown colored.  I got a little sad because the pupil in her right eye is not centered in her eye.  It is small and a little oddly shaped.  My heart hurts for the future and Julia having heartache over being "different."  I love my little girl and she is absolutely perfect.  But not everyone sees the perfection that I see.  I see the courage, intelligence and sense of humor that she has.  I mean really, she takes eye drops like a champ (nothing like her brother - it is like wrestling a wet squid to get drops in his eyes), she has had more appointments than I can count and is about to have her fourth surgery.  She is a champ.  She is beautiful.  She is my Julie-bean.

Functional vision assessment

Julia had her functional vision assessment yesterday.  It was done by a vision specialist from Delta Gamma Center for Vision Impairments.  This is a local non-profit that provides all kinds of awesome services for kids with vision impairments and blindness.  Delta Gamma works with First Steps, which is the early intervention agency for our state.  Julia has been receiving services from First Steps since she was 3 months old due to her vision issues.  Until now, she could not receive services from Delta Gamma because you have to have low vision in both eyes to qualify.  So she received OT from a therapist that specialized in low vision, but didn't work for Delta Gamma.  When we received the results of her acuity testing, her case manager from First Steps put a request into Delta Gamma.  Her doctor agreed that an assessment would be a good idea, and so that brings us to yesterday.

Lindsay came to our house and basically "played" with Julia for over an hour.  She did simple things like placing bright colored objects at different levels and in different places to see if she would scan the room vertically and horizontally.  She watched her try to put things into boxes and take them out.  She tried to get her to track objects.  She took objects from behind her and moved them around to the front to see when she would see them in her peripheral vision.

Overall, Julia did really well.  I do think her new glasses are really helping her see better.  Lindsay noticed that her eye still does turn when she is focusing on things and she did see the nystagmus.  Julia's head tilt hasn't gone away with the glasses either.  Lindsay's recommendation is that Julia be placed on "monitor" status, which means she won't receive direct services from a vision specialist, but will be assessed quarterly to make sure she is developing as she should.  Her concern was that as she grows, she may struggle with print, pictures and other smaller items that kids look at as they grow out of toddlerhood.

Her biggest concerns were that Julia can't see things when there isn't a contrast.  For example, when working with the big duplo blocks, if the base is green, she won't pull up any of the green blocks.  She can't see that they are there because of her lack of depth perception and her poor vision.  But she will pull up the yellow blocks.  She also was concerned about her vision on the right side.  She really didn't turn to look at anything when Lindsay brought it around her right side.  She encouraged me to try putting things on Julia's right to force her to look that direction, even if it means turning her body.  She doesn't want her to get into the habit of not looking to the right since she can't see well out of that eye.  But other than that, Lindsay feels she is behaving like an average one year old!  Hurray!

The other great information I got from Lindsay was a recommendation for a different optical shop that carries miraflex and offers really good deals (apparently they do buy one/get one free so you can have one pair of glasses and one pair of prescription sunglasses!).  We did not have a good experience with the optical shop that made her current glasses (why would you recommend wire frames to an infant is beyond me) but I didn't know what other shop would carry miraflex.  Apparently we aren't the first family she has worked with that has had problems with that shop and she too was perplexed at why they are so adamant that people not use miraflex frames.  So the next time we need new lenses or frames, we will be going to this new shop.

I will get a full write up from Delta Gamma of the assessment, and we will have to have another meeting to re-write her IFSP to include the monitor status (as a special ed teacher, I knew that we would end up with another meeting and more paperwork - I'm just glad I'm not the one writing it!).

So for now, Julia receives monthly visits from her occupational therapist.  She will have quarterly visits with Delta Gamma.  I have monthly visits with Missouri School for the Blind through a program called MOSpin, which is an educational program for parents of children with vision impairments.  And we also see Parents as Teachers a few times a year.  It sounds like a lot, but really, it isn't much.  And it is worth it to make sure that Julia gets all the help that she needs.

So for now we are waiting for her new miraflex glasses to come in and we see her eye doctor on Nov. 1st for a repeat acuity test (Cardiff acuity test) to see if the glasses are helping her vision.  We will also see if we are keeping the glasses for the right eye or going back to a contact and where we are going with patching.