Started new community for moms with children with visual problems and that are impaired

Sarah - posted on 01/09/2013

My daughter was 4 months old when she was diagnosed with bilateral cataracts. The doctors were so concerned because of her age they scheduled the surgery that week. They did one eye at a time and both were successful. She now wears hard contact lenses. It was a difficult time in our lives not knowing what her vision would be and why this happened. She is about to celebrate her 2nd birthday and is undergoing numerous therapies, vision included, and is doing so much better then we could have ever expected! She has an upcoming appointment to schedule and lens implant surgery(s) and I feel like all of the emotions from when this all started are resurfacing. I hope your child did well with the surgery and is taking to the contacts well. I'd love to hear more about your story :)

Nell - posted on 10/01/2012

hi i have a three year old daughter who had cataract surgery at 1 and half years old and wears a contact in that eye the cataract was removed from and has to undergo another surgery on this wednes to have a iol lenses placed in that same eye if there is anyone who has experienced this type surgery with their child give me insight on how it went

Sharlene - posted on 07/23/2012

@Kristin. thank you so much for that info . I will try that link. take care

Kristin - posted on 07/23/2012

Hi Sharlene,

My son is dyslexic which, I know is not quite the same, but I wanted to pass along a little info about a service that has help my son greatly. Learning Ally, (formerly the Readings for the Blind and Dyslexic) can be found at www.learningally.org.

They provide 100's of 1000's of books on audio, and include everything from fiction to text books. I don't want to sound like an advertisement but they really have helped my 11yr old gain some independence, especially when it comes to school work and choosing books of his choice to listen to.
I wish you all the best of luck.

Sincerely,
Kristin Kane
Learning Ally
Parent Network

Sharlene - posted on 07/05/2012

@Grace, thanks for the link darls . take care

Grace - posted on 07/05/2012

Hopefully you're all connected to FamilyConnect community so you can meet others in your state? Or the National Organization of Parents of Blind Children (part of the National Federation of the Blind.) My daughter's story is here [http://www.babymilagro.org/nicuroad.phtm...] and she is now 10 years old, loves to read and write and do math! We're in California.

Brooke - posted on 06/22/2012

my 3 1/2 year old daughter has a cortical vision impairment... meaning her eyes are fine, but the connection between her eyes are brain is affected. vision is definitely one of our biggest struggles. we've been trying to get her to walk, but it's really hard when she can't see where she is walking. she does see some things - looks at light, contrasting colors... will track a little.

Gidget - posted on 04/28/2012

My 13 yr old son had vision issues.. He can see shadows and colors.....He can walk.. thank goodness.. he been walking since he was 4.. he also has cerebral palsy

Nell - posted on 04/05/2012

my two year old daughter has visual problems and is also delayed

Brandi - posted on 02/22/2012

Syntonics is also known as Optometric Phototherapy. There is a lot of info. available on it via search engines on the internet. It seems to have a pretty high success rate. Most often used with children who have strabismus, amblyopia, or learning disorders.

Neuronet is something that was started by an occupational therapist to help a child intergrate all of the senses of the body which is supposed to help the brain processing info. better and faster. There is some controversy as to whether or not this works.

Just wanted some input from others as to their experience with either of these.

Sharlene - posted on 02/22/2012

@ Brandi , Can you tell me more about that treatment or can i get info of google . take care

Brandi - posted on 02/21/2012

I was wondering if anyone has tried syntonic therapy or used Neuronet? We are considering these options that have been recommended by our optometrist for our son.