NOAH AOC

Hello all I am looking for parents of children with OCA/OA in my area in Tangipohoa parish or livingston parish in louisiana. I recently meet with a visual therapist for my son and she told me to get on here and look for parents with the same condition. I would love to meet and speak with other parents who are affected by this so I could get a better understanding of this condition that my son has.

 Christine 

Hello Christine,

My name is Dorothea and my daughter Bethany has nystagmus ocular albilnism. I found out with Bethany was three months old. She now is 6months old. I have learned alot through the website and other parents on this site. If you have any question i will try my hardest to give you an answer or maybe help you find a place on here where you can get the answers. i am still learning myself.

When Bethany first dignosed wtih OA I didn't know what to think or how to act. i didn't want poeple to know I didn't want anyone treated her any differnt. To me she  still is a  beautiful little girl! I know how poelpe can get when a child is differnt. But know I don't care I am very proud of her in everyway, she is beautiful and smart and loves to play and laugh!! I really don't know what to tell you. i can tell that Bethany can see color and light. She does good at picking things up when they are in front of her. She loves to feel evrything that she can. I know if  I move to fast in front of her she doesn't like it so I move slower when I am around her. Bethany will be getting glass in July. My doc believes she sees better far away then up close. But he can't really tell till she is older and can tell him what she can see and can't.  Bethany is also very light skin and almost golden hair. I hope I help alittle if you have any questions please let me know I will try to do my best. I hope to hear from you soon.

Dorothea

we are in se texas near Lake Charles area.. Im not familiar w/ where you all are

 Christine-

I also have a daughter with ocular albinism.  Cassie is 11 months old and a typical little girl.  She's beautiful and intelligent.  I remember when we found out her diagnosis and we were very scared but she's doing great.  We just treat her like any other baby and sometimes we forget her eyesight is impaired!! It sounds like you have the right attitude.  I'm not in your area (we're in the Midwest) but I'd love to chat with you!!

Amy 

All of you are just wonderful...I am so glad that I can turn to all of you with this when I have questions just like I hope you can turn to me for knowledge I know about this....Were in this together for the rest of our lives.. we are located just about 40 miles northwest of New Orleans, La....

I was like many of you with the first diagnosis of bryson and I think I have become well adjusted with it...I do however find myself getting alittle aggaitated with people when they look at bryson eyes and make comments but I guess i have to get used to it...I just get in that protective mode with him, I want to shelter him from the cruel world. The worst thing is still trying to explain to a bunch of adults in our familes that his eyes are NOT going to get better no matter how much they think it has with the nystagmus. well anyways I think I am headed in the right direction with him thanks to NOAH and the wonderful parents on here giving me a heads up on what I should be doing for him. His doctors are so clueless when it comes to OA...You would think for such brainic people that with as much education they have behind them they could at least tell me something about this condition...Ahh NO!!!  Not one has told me anything about this condition and I think its sad! All the knowledge I do have about my son's condition came from parents on NOAH and me doing my own research. I didnt even know about early steps/early intervention until i read up about it on here... He now sees a special instructor once a week and he just seen a vision therapist for the first time the other day. For awhile there I thought he was doing good with his vision until she showed me things that I hadn't witnessed before with him and it just brought tears to my eyes. I know I keep ramping on about him but I haven't really blogged here in awhile now and I just wanted to ask if any of you have brought your kids to the conventions for the blind people yet? The vision therapists said that our state one is coming up in march and the national one is coming up in july. I can't make it to the july one b/c I am due to deliver around that time of the convention but I am considering the state convention. I just wanted to know what to expect at the convention if I do go to one. I look forward to talking with all of you again

 

Thanks

Christine

 

Hi Christine!

How cute your little guy is! I have two boys who have OA. They're both older now (15 and 20) but I remember being where you are quite well.

With that being said however...life gets SO much easier. My boys live very normal lives. Please check out the Vision of Children Foundation website. They do wonderful research on Ocular Albinism and I believe will have a treatment for our kids in the not so distant future! www.visionofchildren.org  We never did anything with the conventions or schools for the blind. I think they are a wonderful resource, but truthfully, my boys wouldn't have wanted a thing to do with it. They have always done well in the mainstream classroom and exceled in school. They have never been classified in their own minds as being visually impaired. They "happen" to be visually impaired - it is definitely secondary to who they are. We treated them very normally when they were little (still do of course), made the necessary accommodations, celebrated their accomplishments probably more than the average family would and really put a lot of effort into raising our boys to have great self esteem. They have never once used their low vision as an excuse for anything or let it stop them from trying anything they wanted to do.

I promise that you will be amazed at what your little guy will achieve and overcome as he grows up. If you have any questions that I can answer or just want to talk - please let me know!

Janice 

Thanks janice for these encouraging words cuz lord knows I need them.....Are any of you going to the convention in Las Vegas in july?

Hello,

My husband and I are dooing to Las Vegas in July with both of our childern. My oldest doesn't have OA but my youngest does. Are you going to Las Vegas?

Dorothea

I can't this year b/c I am due to deliver my baby around the end of july but I just wanted to get a heads up for next year thats all...I want to get involved with all of these conventions for bryson. Louisiana is having their state convention for the blind at the end of march in monroe and I am really considering going to that one but I really wanted to go to the las vegas convention but I will wait until next year..... Make sure you take lots of photos cuz I want to see them..

Christine

Christine,

Unfortunately, NOAH only does their national conference every 2 years, so the next one won't be until 2010.  They should announce at the end of the Vegas conference where the 2010 conference will be held...

I hope its WAY down south... like in TEXAS maybe????? lol

Yeah being in the south would be great since i live here in the south lol....oh well guess I will have to wait unti 2010 to see everyone