Confusion - Eyes- help long

[Guest guest]

I am starting to get caught up on the e-mails here. This topic is

emotionally painful for me. Once someone gets the confusion of vision

understood would

you please tell me how.

Patty's vision has never been clearly understood. And we went to some really

great doctors. She is basically blind in the left with the coloboma from the

iris to optic nerve. She does have slight blurry perifeal finger counting

but still she is blind in that eye. We always knew that. But ... when she was

born she was " blind " in her right due to the coloboma in the back of her

retina. Then she went to 20/200 at around age 3 with an upper field loss. She

was

always considered blind and boy oh boy did that tear my heart out at first.

Then I accepted it and moved on. Heck she was making it through worse things.

But as she started talking she could " perform " the tests better. They also

went with the physical structural characteristics of her. That is just not

enough. She always remained diagnosed with an upper field loss due to her

coloboma her right eye. Around the age of 5 (when she was brought back to

district)

she went from 20/200 to 20/70 in her right. We were told she was not blind

and more than that she was not even considered visually impaired. They said we

were lucky to still have consult twice a year for services for the blind.

Lucky? She needed that service. She wasn't lucky, she was denied. Actually I

spent her entire time begging people to understand all of her physical

disabilities and that they were all connected and multiplied. I begged for them

to

understand her hearing impairment combined with her visual impairment lead to

way to much stress on her learning and they needed to understand that. We

always heard, " I'm sorry but....... "

Anyway, we continued to try to find a doctor who would understand her vision

and couldn't. Around age 10 she was fitted with glasses I think for myopia

and astigmatism. Off to a different doctor at age 12 and low and behold she had

the wrong prescription all this time. It was the OPPOSITE of her vision.

Still she remained at 20/70 corrected. Three times she was fitted with wrong

glasses, and even by those who were knowledgeable of Deafblind. She still only

had consult in school. Sure she had the modifications of classroom positioning,

large print, whatever, but no one worked with her directly. I used to beg

and beg for her vision to be understood in combination with her lack of hearing

and no one understood what I was begging for. They thought I was nuts.

Our luckiest thing that happened is that she received the CHARGE diagnosis at

14. With that diagnosis she now received the label of Deafblind. THAT WAS

HUGE! Sadly by that time though it was about the fight and not what was

appropriate for Patty. I now know we should have at least gone to mediation.

There

were just too many things that went wrong including lack of true

understanding of her functional vision. But even with all of the hardships

there were

phenomenal people who stepped outside themselves and educated my daughter to the

best of their and her abilities. And they often did this without training.

I think it is important we understand that doctors offices are set up in a

way that their optimal vision shines through. It isn't real life. They are

dim, lack visual stimulation and what they are told to see is all they are

looking at. Hey, they also don't even need to move their eyes much. These

doctors

examine the physical characteristics and not the entire functional

characteristics. I can't explain it but I am sure you all understand. Put her

in a

classroom, have a sinus infection, have loud sounds around her, lack of balance,

have tons of stimulation's of all sorts and then have her read more than a

paragraph and her vision goes caput. I begged and begged that someone would

understand and few did. They thought I was making it up. I also think she has a

little CVI but she wasn't evaluated for that either. I was just told no. I

know

she has it as her cranial nerves are involved with her hearing, swallowing,

etc., so why not her vision but no one listened to me. I was also told I said

all this just to receive more services and to not accept my daughters

intellectual limitations!

Finally when she was almost 18 and we were fighting social security to get

SSI for her we were forced to have her have a field vision exam. Guess what

they found-she only has central vision in her good eye of basically 10 degrees.

I think there are other little spots here and there but nothing worth noting.

With that sure she can see, but it is the where, what and how. With this, at

the very end of her school career, she not only finally met the requirements

of being visually impaired she met the requirements of being BLIND.

Absolutely nothing had ever changed and all this time she was BLIND. No, all

this time

she was DeafBLIND with CHARGE Syndrome. My heart was torn apart not because

she was blind but because I failed in that fight so she didn't receive

appropriate services.

In reality what happened to her is what happens to most of our children.

They use what they have to their utmost abilities. Or I should say they use

what

they have to phenomenal levels. They often surpass diagnosis and

expectations. They make their own modifications if people don't do it for them.

They are

born with it so they know no different and it doesn't make them sad, it gives

them more determination-if they didn't already have enough of that!

I have to say that the retinal detachment topic is always in the back of my

mind. It is now in the back of hers. Her pressures also change often. I

don't know why but I have a feeling it has to do with her ear infections and her

sinus. I think it also has to do with stress and even her menstrual cycle.

Sure I've read and read about it but what is real is different from what I read.

Again, if someone could explain it to me I would be ever so grateful.

Oh boy, I guess I have to stop here. I just don't want any of you to travel

down the same road. It could be easier and it often is. Patty's also 21 and

I am sure the medical procedures to diagnose babies and young children have

changed. But I believe everyone must look at your child in their own

environment to understand their true vision. Then we also must realize they use

what

they have to almost miraculous levels. They surprise everyone.

So what else is new!

Bonnie, mom to a 23, Patty CHARGE 21, and wife to