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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Parenting a ROP Child

Hi all,

I am very new to this and i went through a few discussions here. I have a daughter who was born in 26 weeks and has retinal detatchment in both eyes due to ROP. She is 4 years now and both me and my wife are not sure about how to grow her. She is otherwise a bright child and is very sharp. However she does not want to eat food and is becoming very stubborn and does not listen to anything that we say unless she wants to do it herself. She has difficulties in concentrating (she started school this year and we find it difficult to make her to study). She is going to a school for normal children but the school and the teachers have experience in handling such children in the past. We are not sure if we made the right decision and if it would be advisable to send her to a special school. She likes to play with other children but because she is not like other children they find it difficult to play with her. We would be greatful if anyone who has had similar experiences could share them with us and help us overcome these issues and make sure that she is as independent as any other child. You can email me on

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Re:Parenting a ROP Child

ahahahahaha! Not laughing at your prob, just thinking how I was whn I was a child. I do agree with every one that a school for the blind isn't the rout. I never went to one, graduated from a public school with an atvanced deplomma, by the way I spell you would never know that, LOL. Anyway, I think that all blind children have trouble with wanting to, or not wanting to eat serton foods. I have ROP and don't like my food to touch and I am 26 years old with two little whom are 5 and 6 years old. In public school, you will have trouble with teachers doing the things they need to do in order for your child to learn in the way that is best for her, but some times you have to push for what you want. My kids go to the same school I did, the teachers are afraid not to give my kids the best they have because of my father standing up for my rights so, they get treated good. I hope that this helps you. If you have any more questions, please e/mail me at: Hope to hear from you soon.

Re:Parenting a ROP Child

Hello, my name is Paulina I'm 16 and have ROP and what your describing is that i think going to a public school will be better knot that i hate a school for the blind i have ben going to public school since i was 5 and i think that the food problem is funny because i still don't like to touch food or things like that i also think that she should have a Orentation and mobility teacher help it helps really good and maybe the braille institute good luck Paulina

Re:Parenting a ROP Child Benefit of Yoga and Prayanam in Eye Disorders

Dear friend,I am from India and I am blind by right eye due to cataract then before retina detactment and left eye having spactacle for near and distant.I consulted with so many doctor but no one give perfect treatment or said my problem is critical and there is no perfect medicine for this but once I heard about Yoga and Prayanam and started the both then after six month my spactacle removed and my blind eye becoming healthy but slowly.So you can easily find Yoga and Prayanam Classes in your location if you life.
S Bargate

Re:Parenting a ROP Child

Wow, the way your kid is, that describes me in every way. i'm 16 and have ROP. I don't think you should send her to a blind school at all. I went to one and it was misserable. If she has eating issues like I do, blind school force you to eat what they want you to. Public school is horrible too because me and my family have to fight for hverything, and I have no friends at my school. I know exactly how hard it is to have ROP.

Re:Parenting a ROP Child

HI there,
In reading your response I had to chuckle, as what you are discribing is exactly what my parents told me I was like when I was a child at that age. I am blind due to ROP and I definitely recall being tactile defensive around food, and being stubborn wanting to do things myself. In terms of sending your kid to a school for the blind I would strongly discourage it. Being a product of the braille jail, as I like to call the school's for the blind, I find them extremely lacking in giving a blind person the coping skills necessary to deal with the real world. Yes, you have a chance to do sports, and participate in extracuricular activities that are geared to blind students, but you really don't get the taste of the real world that you would with a public school setting etc. Granted, as a kid, when I attended public school, I had to fight, kids made fun of me, and I did get beat up on a bit, but I also had some good friends as well. The biggest thing that public school teaches you as a blind person that the blind school's don't is how to be self sufficent. Consider this, if all goes well your child will attend college, work, get married, have kids, and be a regular participant in society which is what every parent hopes for. The fact of the matter is the blind schools, tend to spoon feed you everything from adapting your books to watering down the education that your child receives. When i graduated the school for the blind, I had no concept of what college was to be like when i first tried to attend, and I just fell through the cracks. Yes, part of this was I partied, and drank too much beer, but I had no idea that professors would not care one way or the other whether or not I could or could not read a sylabus, or could see what is on the board, or insert your favorite college classroom senario here. BY going to a public school you and your kid will have to fight to get what your kid needs, when your kid gets out in to the real world they will have to be their own advocate to get acomidations made if needed for them, and short people have to use a step stool, and tall people have to bend over.... Better to learn how to deal with the real world early, then to come in at it later.

Re:Parenting a ROP Child

does your child get specialized services in the school? she should have at the very least a teacher of the visually impaired, but may be eligible for other services, such as orientation and mobility, occupational therapy, etc. she should have an IEP (individualized education plan). there may be frustration over things she cannot do in the same ways as the peers in the class.

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