I just found this group and hope I can talk with some people who 1)
believe that Irlen Syndrome exists and 2)can help me with issues
about my granddaughter, who I believe has it.

I'm pretty positive my granddaughter (7 years old) has Irlen
Syndrome, but I have only been able to have her screened by a family
member who got certified several years ago. I had to do it
secretly, since her father (who has custody of her) didn't want her
tested because her teacher said she was above grade level in
reading. Of course, it's only because she guesses and looks at the
pictures. She's going into second grade this year, so she will
probably continue to "fake" everyone else out for awhile because
she's still in picture books. She tells me she's afraid to get in
trouble so she continues to guess at words and try to figure out
what's on the page. She was labeled "severe" by my sister-in-law,
so I am in the process of trying to convince my husband and my step-
son that she needs a diagnostician to find her colored overlays that
work for her. The fifteen that my sister-in-law had did not stop
the movement, just slowed it down slightly, so I know she needs more
extensive testing, but I cannot get anyone around me to believe me.
It's so frustrating!

I believe Irlen Syndrome is hard to diagnose because unless you ask
children to tell you what THEY see (which noone does), you will miss
it. My granddaughter has all the classic symptoms and I can see it,
but I am looking with my eyes wide open. She can read better in
darkened conditions, with no glare, when I make her read only what
she sees, she skips a lot of words, and loses the context of the
page unless she can see a picture. She says the words go up and
down like a rollercoaster, and sometimes go off the page. She can
read better if the pages are not white, and if the words are large.
She does ok on the computer with 14font. She cannot sit still at
dinner, usually gets up and stands at the end of the table halfway
through, and if made to sit still, fidgets and fidgets. She whines
and tries to postpone reading assignments. I thought for awhile she
might have ADHD, but now I think it is just Irlen. It baffles me
that I'm the only one who can see there is a problem. When I tried
to get her teacher to check for it she got afraid that she would
look bad because it was at the end of the year and she had been
telling Kati's father that she was above grade level in reading, so
she emailed him that she was uncomfortable talking to me about it
and he told me to stop interfering with her school stuff or he would
not let me see her anymore.

I know that when she is in 3rd or 4th grade, when the picturebooks
go away, that then she will maybe get some help, but until then,
what can I do to help her cope? I did manage to get a little ruler
with a blue overlay in it from the special ed teacher to give her
and it helps a little because it helps her keep her place better,
but I don't think they will let her wear a brimmed hat in the
classroom.

I'm worried that by the time this comes out in the open her self-
esteem will be damaged. I have told her that I know she has a
problem, but until she tells someone what she is seeing they will
not believe me. I tell her I think it's endearing that she only
sees some of the words and that there is help for her that will come
eventually. When she complains about glare I tell her it's because
of her communication between her brain and her eyes, so that she
will not think it's just her imagination, and that if she dims the
lights or wears a dark brimmed hat it will help. I am trying to
help her understand that it's just a brain issue that a lot of
people have and that I know she is not lazy or stupid. If that's
all I can do for now, I can live with that, but does anyone know if
there is something else I could be doing for her to help ease my
pain?

I am hoping that just being able to vent here will help.