How to deal with my son being blind?

Ashley - posted on 12/12/2009 ( 13 moms have responded )

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I want to start off by saying I am 22 and this is my first child. His name is Aidan and he is 19months old. And I absolutely adore everything about him. He is so amazing and sweet I couldn't have asked for a more loving child. Aidan is blind. We've just found out last month. We knew he has eye problems but we learned through testing that he is indefinitely blind. And I just can't get a grip on my emotions. I find myself both in awe of my son but so sad that this is now my life. I'm so scared about his happiness when he gets older and about all of the things that he will miss out on in life. I don't know any blind people or anyone with blind children so I have no idea about what to expect. I am terrified, sad, angry, lonely, and a million other emotions. Please don't get me wrong I love my son with everything in me. I'm just so afraid that he won't have a fulfilling life and neither will I. Can you please share with me how you came to terms and any information on the quality of life for the blind? Thank you so very much!

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Jessica - posted on 10/25/2012

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Hi- I am the mother of a blind three year old, Thomas. He is my first and only child. I found out he was blind right after he was born and it was a shock. Like you I was angry and scared but it is something you have to try to get over and get on board with. You will have to be your son's advocate and having a positive view of blindness and your son's potential as a blind child is essential.



With the technology available today the sky is the limit for blind children. He can have a good an happy life if he is taught the blindness skills (Braille and cane training) he needs for an independent life. I will not be easy but I'm sure you will agree that your son is worth it:)



My son is learning to use a long white cane (it's the cutest thing) and learning pre-Braille skills. Don't let anyone scare you about Braille. If he is blind he needs it and no - it isn't that hard. Braille is simply a code for english. That's all. I am learning to read it by sight and my son is learning to read it with his hands. There are many resources that will give you free Braille books so you can start exposing your son to it.



Check out the blog I write about my son http://thomasmarshalldoesitall.blogspot....

It should help you and feel free to email me through my blogger profile. I have lots of resources on my site that should help you.



Good luck to you and your son!

Jessica

Amy - posted on 01/16/2010

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My son Demitri is 15 months old and has Septo Optic Dysplacia, he has a conformer for his left eye and has a clouded micro cornea on the right, (he can even see light through). We struggled trying to answer the "why" question then searched for someone to help us "fix" his eye. We realized very quickly that there was nothing we could do, we cried alot and prayed alot. One night I was at Walmart late at night and saw a guy about my age with a little baby girl in a stroller, she was blind too, but she also had heart problems and a list of other things wrong with her, my heart broke listening to what she had already gone through and what was still yet to come, I cried the whole way home, because I felt so lucky that my son is healthy, I felt almost guilty for feeling sorry for myself and my son. Time has a way of healing all wounds, and making us see things in a different light! It turns out that my neighbor is blind and deaf, married and she has two teenage kids and loves to garden, they go hiking, kayaking and camping all the time, so I guess it is true that life is what you make it! I know that they have programs, here in FL it is Lighthouse, I think you can check http://www.afb.org/ to see what you have in your area, and also look at this link too http://www.seedlings.org/bkangel2009.php you can sign your son up for two free braille books, it is really kind of amazing of all the things out there when you start looking!! You are not alone, it can be hard and heartbreaking but just remember that your son only knows this life, he does not cry because he cant see, he sees the world in a way that we can never understand, be strong and loving and happy because that is what he needs the most!!

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Sonja - posted on 07/20/2012

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Hi Amanda,
Thank you for posting. My son did not go to a residential school. He was mainstreamed in regular education throughout his school experience. We did have him evaluated at a School for the Blind when his public school was not provided appropriate services. The School for the Blind backed us up in their evaluation of the types of services our son needed to be successful in school.

Amanda - posted on 06/28/2012

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hi all my son is 6 years old deaf and blind ye i know how fell we all gone tho thos feelings it hard road especial when their ant support group on face book just dont know ware too turn ....do any ur children go too residential school x

Amanda - posted on 06/28/2012

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hi all my son is 6 years old deaf and blind ye i know how fell we all gone tho thos feelings it hard road especial when their ant support group on face book just dont know ware too turn ....do any ur children go too residential school x

Amanda - posted on 06/28/2012

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hi all my son is 6 years old deaf and blind ye i know how fell we all gone tho thos feelings it hard road especial when their ant support group on face book just dont know ware too turn ....do any ur children go too residential school x

Ashlee - posted on 01/07/2012

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What does he have exactly? My name is Ashlee..im 21 and my son mason will be 2 on jan 10th....he has optic nerve hypoplasia and septo optic dysplasia

Heather - posted on 12/01/2011

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Ok, I'm going to be blunt and honest, and please know that I am not trying to be cruel in any way. A. Get over it. B. If you can't, then when you are around your child, pretend as if you have gotten over it, and then find support here, from your spouse, your friends, a tharapist, etc, when your child is not around, because, while it may be genuinely upsetting to you, it is not his problem. C. blind children, will not naturally be frustrated with, depressed by, angry about their blindness, unless they are taught these attitudes by their parents, peers, etc. They may become angry with the way our society feels about them and their compitence, they may become frustrated with things that are inaccessible, and they will sure as heck become depressed if they realize how you are feeling about it. But, to them, it is just a thing, like the color of their skin, their gender, their facial features, it's part of who they are, they really can't change it, it will effect how people think of them and treat them, whether that's fair or not, and it will inform their life in both positive and negative ways every day, to varying degrees depending on the day. That's all. Pitty is not only worthless, it is highly detremental, and sympathy is akin to pity. Empathy is different from either pitty or sympathy and it is healthy and benificial in reasonable doses, and it comes from understanding, not saddness. It comes from perspective and awareness, not from "compassion" or charity. My son is three years old and he is blind, he has low vision and he couldn't care less. He's looking forward to getting a guide dog, he is an ensightful, persnickity, little character and if you met him you probably wouldn't even realize that he is blind right away. Blindness will limit your son, but your negative attitude, if you can't get past your and his pity party, and the pity and sympathy of those around him will limit him hundreds of times more than his blindness ever will. But, if you can shake off the majority of your sadness, and various sorts of pitty, self and for your son, you will help empower him to rise above the negativity and well-meaning but highly harmful pity of others, which unlike your own attitude, you can not change. I'm here to be supportive, but when I am supportive to my friends it is often a combination of holding them close and helping them up when they're hurting and kicking them in the butt when they're getting stuck and bogged down, depending on what the situation warrents. But, I will always be honest and I've got a great deal of personal experience with this topic, so feel free to reach out any time you wish. email is heather.l.bird@gmail.com

Sonja - posted on 02/10/2011

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Also, there is Family Connect. www.familyconnect.com that has some great resources for families. NAPVI is a national organization for parents of blind children. Each state has their own NAPVI. In CA it is called CAPVI. For those with children who have Leber's Congenital Amaurosis, there is LCA@yahoogroups.com which is a listserve of parents of children, older children, and adults who have LCA. I have a website at www.sonjabiggs.com There are a lot of resources available for young parents. You can also add me on your FaceBook as a friend. Just let me know you are a mom with a blind child. Lots of love and hugs to all of you!

Sonja - posted on 08/13/2010

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Ashley, your feelings are very normal. My son is 18 and doing very well. He graduated with a 4.2 GPA and has won many awards for his accomplishments as a blind actor/performer, but I still, in my heart, vacilate from feeling in awe to feeling sad inside. He is very successful, but his success comes from his hard work and determination to be the best he can be. He faces many challenges I will never have to face and he faces them with dignity and perserverance. He makes me proud to be his mother. However, deep down, I will always wish he could see.

Amy - posted on 08/12/2010

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My parents took it hard. But I am very happy. Some blind peole take their blindness well and some are very bitter. It depends on how they deal with it. that is the only thing your son will know. Alot of blind people lead happy and filled lives. I hope this helps. I have hard times. It is hard depending on someone for a ride because I can not afford a taxi cab. So I call friends and family to help. I am greatful but feel I do not have a schedule of my own but I get upset now and then. I know there is nothing I can do about it.

Julia - posted on 03/15/2010

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Hi, my name is Julia and my son is 16 yrs old and he was born blind. I think that was to his advantage because he’s never known any other way to be. Unfortunately there is nothing I can say to you that will take away the way you feel. Try to accept the fact that you will be on an emotional roller coaster for a while. You will have good days (even weeks) and then something will catch you off guard (mine recently was a rainbow) and BOOM bad day, but eventually time, education and acceptance will make it better. I commend you for asking for help in a place where you know people have been where you are now. You have a lot on your plate just by being a first time mom that in itself is very emotional. You will find your own way to make it work best for you and your child, I’m now saying don’t educate your self about things (blindisums) but that life is what you make of it and in the long run you and Aidan will have a happy and fulfilling life because you will love him and you will make it happen. I’m not sure if anyone has told you about this poem yet but just incase here it is:"Welcome to Holland" By Emily Perl Kingsley, 1987. All rights reserved. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Erica - posted on 02/25/2010

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Hi, my name is Erica and I am 20. I had my first child in September, Freya Gwen. She is now 5 months old, and we found out that she has a problem with her vision at 2 months. I am so very scared and I feel sad all of the time. I worry about everything. I worry about her seeing all of the beauty in the world and also about things such as learning to walk. I know she is happy, she babbles and smiles all of the time. She is so sweet. I just get so emotional. I am worried about how to explain to her later in life that some people can see. I don't know how to explain it to her. The other day, I saw one of my girlfriends at Wal-Mart and her little boy looked at me while I was talkling to him and when I was walking away I could not stop crying. The other thing that really gets to me is that as of right now, we don't know what is wrong with her eyes and if it can be fixed. All I can do for now is wait and keep praying. She goes for an ERG next month. What I would really love is to have someone to talk to.

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