Dear Friend, My son, Skylar, is blind from birth and please Google his name "skylar covich" and look at articles on what he has done. My son and I rode on a tandem bike almost every day from when he could sit and hold on. As far as independence, my son went to all main stream schools, he was in the marching band in grammar school and high school. He navigates with only a cane. He has lived away from home independently for the last 6 years at college where he graduated college as the top student in his school. He is happy, he plays the piano, downhill skis and he has a dynamic social life.
Make certain that you learn the IEP process in schools, get all the equipment that is available, laptop with Jaws, braille note, talking cell phone. GPS at some point. ( I am not sure how old your son is?) Keep your focus on the research, I do not know where you live but we see a researcher at USC in southern California who is on top of what is going on (Dr Sadda USC).
In summary, your child will have a great life because technology will help him succeed. If you want to contact me direct do so at frankcovich@yahoo.com and I may be able to give you some additional thoughts on what worked well for my son.
Keep him safe and keep your focus building your life also. He will do more than you could ever dream. Frank Covich Father of Skylar Covich now a Phd student at UCSB a professor in training.
Submitted by carrie on Oct 18 2011 - 10:15pm
Hi,
My son has the same eye condition and he is now 21. When I first learned of it I cried for 3 weeks straight. I did not know anyone who was blind, I thought his chances for normalcy were gone. He has some small limited usable vision. Mostly his vision is pleasurable not so useful for actually recognizing people, gaining information efficiently and accurately and safely in most daily activities and tasks~so he functions mostly non-visually but he has gotten really good at using his vision WHEN IT REALLY WORKS and non-visual when that works better. He uses a cane. He is a junior in college and wants to become a judge someday. He has a dorm apartment, cooks many of his own meals, does his own laundry...in short he lives a totally normal college life...except he reads using braille, and uses screen reading software on the computer and some other non-visual technologies to get access to his coursework and to write long answers or notetaking. He also went to all mainstream school k-12. The main educational risk I observe with low vision children is a 'sighted-bias' where the child does not get enough training in non-visual skill and is made to use their vision beyond true effectiveness, more because it seems more 'normal' to educators and/or parents.
The answer from Skylar's Dad is very good. It is VERY important to know the IEP process accurately and your rights and what consitutes a proper education for a blind child, and in particular your child. Never forget you have the phD on him. My son has some vision, but I have learned that it is not so much the amount of vision a child has that determines level of independence but the level of proper training, and normal expectations and growing-up experiences the child lives with everyday. I know alot of blind adults of great variety. Some rode (regular and or tandem)bikes as children, roller skated, skiied, swam, climbed trees, climbed rocks, in short were very active and encouraged in their activity, and had active type personalities...they found a way to do whatever they wanted. My son was kind of medium, he liked to ski, tandem bike, swim, a little wrestling one year, but he was like the 'friendly' wrestler, lol...but he is not so interested in phyiscal activity as an athletic type or competitive type, I'd say he's average. Some blind kids have fear (don't like skinned knees! lol) little interest in high activity, just like some sighted kids...you have to get them up and moving at least enough to be healthy. Blind people range in interest and personality~if they do or don't do something it should usually always be because of a personality choice~not because they are blind.
We found resources through an organization of blind people. There is a free online magazine that is very good www.nfb.org click on publications, then Future Reflections...and old special issue that may help alot to start is called blindness and low vision...another if your child is young is The Early Years issue, there is a special issue on sports and recreation too that gives alot of adaptive ideas. You may email me as well if you wish; carrie.gilmer@gmail.com. It seems like this website is pretty helpful too :)
Best,
Carrie
Submitted by malandsannet on Oct 19 2011 - 12:46am
Dear Frank and Carrie,
Thank you so much for the very encouraging replies. I truly appreciate it! I am in Darwin, Australia (but I am Afrikaans) and there are no support groups or even forums here. The RIDBC is starting a forum but I have been desperate to speak to other parents and hear about the road that they have travelled. Mackenzie is 3 now and is doing okay, but he has Sensory Processing issues on top of his VI and so he is globally delayed. I am waiting for him to be assessed to get a clearer picture. I am very excited to hear how independant your children are - It must have been a long hard road. Do the professionals and other people also tell you to "stop worrying and just love and enjoy them." Of course I love and enjoy my children that is why I am seeking answers so that I can give them the best possible opportunities. My other son also seem to have the same condition but it will be confirmed next year when he is 2 years old.
Carrie, do you know what your son's Visual Acuity is? I know for a fact that Mackenzie only recognizes me by my voice, he can get around okay in buildings but battles outside. He is starting Pre-school next year at a special school and hopefully we will have some breakthrough there - I hope for him to go to a mainstream school later on.
Thank you for providing your e-mail addresses, I will hold on to them as I am sure I will need them one day.
Once again thank you very much for giving me a positive picture of what the future can hold for both my boys. As you suggest Frank - really, the sky is the limit.
Kind Regards,
Sannet
Submitted by malandsannet on Oct 19 2011 - 6:11pm
Hi Frank,
My apologies, I did not quite know how this works, so I replied by writing in the Answer a Question block. Please read it when you have a moment. :-) I also would like to know if Skylar had any sensory processing issues as a young child. This seems to be what is affecting Mackenzie's learning most. No one can tell me if he will grow out of it.
Thank you so much and Kind Regards,
Sannet
Submitted by malandsannet on Oct 19 2011 - 6:12pm
Hi Carrie,
As I told Frank, my apologies, I did not quite know how this works, so I replied by writing in the Answer a Question block. Please read it when you have a moment. :-) I also would like to know if your son had any sensory processing issues as a young child. This seems to be what is affecting Mackenzie's learning most. No one can tell me if he will grow out of it.
Thank you so much and Kind Regards,
Sannet
Submitted by Amber Bobnar on Oct 21 2011 - 11:01am
"The son will be as independent as they encourage him to be. I know blind people who travel the world and others who went to Harvard. I also know some kids who aren't expected to do anything, and so they don't and in the future, they won't."
And another:
"Also hav th sam question wth my 11 months old son, who's suffering from congenital glaucoma, but I believ he'll make it just like any other visualy impaired children. I know exactly how u feel.
Just stand by your son, he's not th only one."
Submitted by malandsannet on Oct 21 2011 - 9:37pm
Thank you very much for all the encouraging replies and I agree 100% that it is up to us as parents to do the best we can. What I am not getting an answer on is about the Sensory Processing Dysorder. I believe that some VI children have it and some don't. Is there anyone's child that had it but grew out of it? What therapy did you use to deal with it? I am exploring all avenues to try and find what is best for my son.
Submitted by Amber Bobnar on Nov 1 2011 - 8:57pm
It's not at all unusual to have a Sensory Processing Disorder when you're visually impaired - lacking one sense (vision) can really throw the others off. Occupational Therapy focuses on Sensory Integration and helps VI children learn to process their environment better. The first thing to do would be to get in touch with a good Occupational Therapist.
I don't know that kids necessarily "grow out of" this disorder on their own - though their symptoms and reactions may get better over time. It's certainly treatable with therapy though.
One place to start looking for info is the special needs pages on About.com. The author, Terri Mauro, has written quite a bit about Sensory Processing Disorders and she lists her favorite articles, books and websites that she thinks are helpful for parents:
Dear Friend, My son, Skylar, is blind from birth and please Google his name "skylar covich" and look at articles on what he has done. My son and I rode on a tandem bike almost every day from when he could sit and hold on. As far as independence, my son went to all main stream schools, he was in the marching band in grammar school and high school. He navigates with only a cane. He has lived away from home independently for the last 6 years at college where he graduated college as the top student in his school. He is happy, he plays the piano, downhill skis and he has a dynamic social life.
Make certain that you learn the IEP process in schools, get all the equipment that is available, laptop with Jaws, braille note, talking cell phone. GPS at some point. ( I am not sure how old your son is?) Keep your focus on the research, I do not know where you live but we see a researcher at USC in southern California who is on top of what is going on (Dr Sadda USC).
In summary, your child will have a great life because technology will help him succeed. If you want to contact me direct do so at frankcovich@yahoo.com and I may be able to give you some additional thoughts on what worked well for my son.
Keep him safe and keep your focus building your life also. He will do more than you could ever dream. Frank Covich Father of Skylar Covich now a Phd student at UCSB a professor in training.
Hi,
My son has the same eye condition and he is now 21. When I first learned of it I cried for 3 weeks straight. I did not know anyone who was blind, I thought his chances for normalcy were gone. He has some small limited usable vision. Mostly his vision is pleasurable not so useful for actually recognizing people, gaining information efficiently and accurately and safely in most daily activities and tasks~so he functions mostly non-visually but he has gotten really good at using his vision WHEN IT REALLY WORKS and non-visual when that works better. He uses a cane. He is a junior in college and wants to become a judge someday. He has a dorm apartment, cooks many of his own meals, does his own laundry...in short he lives a totally normal college life...except he reads using braille, and uses screen reading software on the computer and some other non-visual technologies to get access to his coursework and to write long answers or notetaking. He also went to all mainstream school k-12. The main educational risk I observe with low vision children is a 'sighted-bias' where the child does not get enough training in non-visual skill and is made to use their vision beyond true effectiveness, more because it seems more 'normal' to educators and/or parents.
The answer from Skylar's Dad is very good. It is VERY important to know the IEP process accurately and your rights and what consitutes a proper education for a blind child, and in particular your child. Never forget you have the phD on him. My son has some vision, but I have learned that it is not so much the amount of vision a child has that determines level of independence but the level of proper training, and normal expectations and growing-up experiences the child lives with everyday. I know alot of blind adults of great variety. Some rode (regular and or tandem)bikes as children, roller skated, skiied, swam, climbed trees, climbed rocks, in short were very active and encouraged in their activity, and had active type personalities...they found a way to do whatever they wanted. My son was kind of medium, he liked to ski, tandem bike, swim, a little wrestling one year, but he was like the 'friendly' wrestler, lol...but he is not so interested in phyiscal activity as an athletic type or competitive type, I'd say he's average. Some blind kids have fear (don't like skinned knees! lol) little interest in high activity, just like some sighted kids...you have to get them up and moving at least enough to be healthy. Blind people range in interest and personality~if they do or don't do something it should usually always be because of a personality choice~not because they are blind.
We found resources through an organization of blind people. There is a free online magazine that is very good www.nfb.org click on publications, then Future Reflections...and old special issue that may help alot to start is called blindness and low vision...another if your child is young is The Early Years issue, there is a special issue on sports and recreation too that gives alot of adaptive ideas. You may email me as well if you wish; carrie.gilmer@gmail.com. It seems like this website is pretty helpful too :)
Best,
Carrie
Dear Frank and Carrie,
Thank you so much for the very encouraging replies. I truly appreciate it! I am in Darwin, Australia (but I am Afrikaans) and there are no support groups or even forums here. The RIDBC is starting a forum but I have been desperate to speak to other parents and hear about the road that they have travelled. Mackenzie is 3 now and is doing okay, but he has Sensory Processing issues on top of his VI and so he is globally delayed. I am waiting for him to be assessed to get a clearer picture. I am very excited to hear how independant your children are - It must have been a long hard road. Do the professionals and other people also tell you to "stop worrying and just love and enjoy them." Of course I love and enjoy my children that is why I am seeking answers so that I can give them the best possible opportunities. My other son also seem to have the same condition but it will be confirmed next year when he is 2 years old.
Carrie, do you know what your son's Visual Acuity is? I know for a fact that Mackenzie only recognizes me by my voice, he can get around okay in buildings but battles outside. He is starting Pre-school next year at a special school and hopefully we will have some breakthrough there - I hope for him to go to a mainstream school later on.
Thank you for providing your e-mail addresses, I will hold on to them as I am sure I will need them one day.
Once again thank you very much for giving me a positive picture of what the future can hold for both my boys. As you suggest Frank - really, the sky is the limit.
Kind Regards,
Sannet
Hi Frank,
My apologies, I did not quite know how this works, so I replied by writing in the Answer a Question block. Please read it when you have a moment. :-) I also would like to know if Skylar had any sensory processing issues as a young child. This seems to be what is affecting Mackenzie's learning most. No one can tell me if he will grow out of it.
Thank you so much and Kind Regards,
Sannet
Hi Carrie,
As I told Frank, my apologies, I did not quite know how this works, so I replied by writing in the Answer a Question block. Please read it when you have a moment. :-) I also would like to know if your son had any sensory processing issues as a young child. This seems to be what is affecting Mackenzie's learning most. No one can tell me if he will grow out of it.
Thank you so much and Kind Regards,
Sannet
A couple of replies from our Facebook page too: http://www.facebook.com/wonderbaby.org/posts/207346769336952
One mom says:
"The son will be as independent as they encourage him to be. I know blind people who travel the world and others who went to Harvard. I also know some kids who aren't expected to do anything, and so they don't and in the future, they won't."
And another:
"Also hav th sam question wth my 11 months old son, who's suffering from congenital glaucoma, but I believ he'll make it just like any other visualy impaired children. I know exactly how u feel.
Just stand by your son, he's not th only one."
Thank you very much for all the encouraging replies and I agree 100% that it is up to us as parents to do the best we can. What I am not getting an answer on is about the Sensory Processing Dysorder. I believe that some VI children have it and some don't. Is there anyone's child that had it but grew out of it? What therapy did you use to deal with it? I am exploring all avenues to try and find what is best for my son.
It's not at all unusual to have a Sensory Processing Disorder when you're visually impaired - lacking one sense (vision) can really throw the others off. Occupational Therapy focuses on Sensory Integration and helps VI children learn to process their environment better. The first thing to do would be to get in touch with a good Occupational Therapist.
I don't know that kids necessarily "grow out of" this disorder on their own - though their symptoms and reactions may get better over time. It's certainly treatable with therapy though.
One place to start looking for info is the special needs pages on About.com. The author, Terri Mauro, has written quite a bit about Sensory Processing Disorders and she lists her favorite articles, books and websites that she thinks are helpful for parents:
http://specialchildren.about.com/od/sensoryintegration/bb/dsiresources.htm
Thank you so much Amber. You did a wonderful thing starting this website. It has been very helpful. God bless.