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Your stories – Our experiences with a teacher of the visually impaired

January 31, 2012 3 comments

Many thanks to Sarah who sent in her account of working with a teacher of the visually impaired. – Ann Z

My nearly four-year-old daughter Isabella has multiple ocular diagnoses: severe hyperopia (farsightedness), astigmatism, mild macular hypoplasia (“underdevelopment of the macula, a small area on the retina responsible for seeing in detail” – read more) , latent nystagmus (“involuntary rapid movement of the eyeball, occurring only when one eye is covered” – read more), and intermittent exotropia (“eyes that turn outward” -  read more).  She began seeing an ophthalmologist at six weeks old and received her first pair of glasses at 15 months. Today at nearly age four, her acuity measures about 20/70 with correction. Isabella also has bilateral sensorineural hearing loss, childhood apraxia of speech (a motor speech disorder),  hypotonia (low muscle tone), and fine and gross motor delays.

girl wearing glasses

Isabella

Read more…

your stories: growing up legally blind

April 20, 2011 6 comments

Many thanks to Melissa for sharing her story about growing up legally blind.  I hope you enjoy it, and find it as helpful as I did.  You can read more of Melissa’s writing at her blog, Wisdom from the Other Side.  - Ann Z

I went through it all as a kid.  I had my first surgery at 18 months to correct my crossed eyes, my second at 5 years to try and correct a nystagmus.  At different points in my childhood I wore glasses, contacts and a patch.  Growing up legally blind never stopped me from pursuing my dreams.  For those moms out there raising legally blind or visually impaired kids, I want you to know that even though your child may have to work a little harder in other areas then sighted kids they are capable of doing anything, and being anything!

I was born legally blind with crossed eyes, cataracts, nystagmus and severely underdeveloped optic nerves.  My vision is only slightly correctable.  I’m nearsighted as all get out.  During eye exams the only thing I can see is the big E which makes my vision un-measurable.  My vision can be corrected up to 20/800 in my good eye, but with glasses I have to give up seeing anything up close for a small amount of distance vision.  A trade off that just isn’t quite worth it when I spend all day in front of a computer.

picture of a young girl in glasses from the '80s

the author, at age 20 months.

Having been where a lot of your kids are now I want you to know that growing up, I never knew that I had a disability. I never felt different from other kids and I’ve always known that I could do anything I set my mind too.  I knew I had to do things differently than other kids, but what set me apart also made me special.  I can only imagine what it must be like to be a parent raising a legally blind or visually impaired child – but from the point of view of the kid it’s all perfectly normal.  I’ve never been able to read subtitles, or see the chalkboard from the front row.  I’ve always had a pair of glasses or a monocular with me.  My life isn’t any more or less difficult because of my vision, it’s just different.

I spent the entirety of my K-12 education in a regular classroom.  I did the same assignments and was given the same expectations as the other kids, with some modifications as needed; I was also given special Orientation and Mobility (O&M) instruction.  My O&M instructor taught me how to go grocery shopping, read traffic patterns and ride the bus – all the skills I would need to move out and go to college.

I truly believe that part of the reason I’m a successful adult is because of my vision. Not being able to see something was never an excuse for not doing it.  I might have to do things differently than other people, but it still gets done.  I know that I can do anything, and I have.  I earned a Masters degree, I work full time in a position of responsibility and best of all I’m the mother of a wonderful baby boy.  I’ve completely mastered my disability, and I’ve been able to turn it into an asset.

There are a lot of resources available to legally blind children, including tuition assistance for college.  Most states have a Department of Services for the Blind that offers vocational training.  If a legally blind child wants to pursue a vocation that requires a bachelor’s degree, the Department of Services for the Blind will cover part, or all of the tuition.  State departments for the blind also offer orientation and mobility instruction, equipment and a network of individuals in similar circumstances.  They are a wonderful resource!

To any mom who has questions about what did and didn’t work for me growing up, please feel free to e-mail me at Melissa@wisdomfromtheotherside.com.

Reader request: Looking for other parents dealing with optic nerve hypoplasia, nystagmus, and myopia

December 11, 2010 5 comments

This plea was posted by Dawn in our facebook group.  She asked if I could post here, too to see if anyone has dealt with something similar.  -Ann Z

My daughter is 13 months old, and I took her to the eye doctor today. She has optic nerve hypoplasia and nystagmus, but to top it all off, she’s also nearsighted.  The doctor prescribed -7.00 lenses/glasses for her. I know it’s not common for such a young child to be nearsighted. I’m completely thrown off! Anyone have experience?

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