NOAH AOC

HI everyone.  My son will be 8 months old in a few days.   He has OCA.... and we have known since the day he was born.  He has seen his eye specialist once, and that is when he was three months old.  His next appt is April 4th (yaaaay)  so I feel like I will know alot more as far as how his vision is then.  I know a couple of other mom's I have met say their babies (who are a month or two older than mine) have been seen many times by their eye doctors, and 2 of the babies have already had eye surgeries.   I must add that I was very impressed w/ how knowledgable our doctor was on Albinism.  We had to drive a couple of hours to get to where she is located, but, she is well worth it!   

We have been having ECI come to our house once a month, and they have been very helpful w/ my son.  They have even discussed him going to a Pre pre-school when he is three for half a day, five days a week to get him ready for school.   I am very excited about that.  Anything to help him, sounds great to me. 

One of my questions are....... do most of your children attend public schools? .. and if so, are they in the 'regular' classes?  I have heard that some people go to the school for the blind, or are in Special Needs class... I am just curious what is more common w/ all of you guys. 

Also...... Will my son be eligible for any sort of financial services b/c of his low vision?   We are comfortable, financially, but if he is eligible for any sort of help or services, then I think I should def. check into, and thought I would ask you all first.  

Thanks in advance.

my albinism was diagnosed soooo late...at age 19.

 i attended regular school...my mom would not allow me to be put in special ed...which hurt me in way of services...i had a 504 plan but it was never really enforced because i wasn't in special ed.  They were a pain...my vision aid...was a person who came once a year to test my reading...and a meeting with people i didn't know.  that's it.  No occupational therapy, no vision aides, nothing.  Everything i need now needs to be privately purchased...because i'm not legally blind in my right eye with my glasses...but i still can't drive or read regular print.

Visually impaired kids today have it much better than i did...and i'm glad they do...because i don't want any kid to live through what i did....NEVER.

i wish both of you the best of luck :)

Hi -

I have OCA, and I went to "regular" school, and I would suggest your child does the same, unless he has other conditions that prevent him from doing that.

For most children with albinism, regular school is totally doable, with some visual aids where needed. (Such as large text books and printouts, etc.)

I think it is important to challenge your kids academically and urge them to get the most out of their school. And I think this is more possible in a mainstream classroom, rather than a special ed one.

By all means get all the services you need, be in touch with the teachers, but don't be over-protective of your child. This might hurt him rather than help him in the long run.

M. 

 I have twin boys (two years old) and they were diagnosed at birth as well. I doubt you will be able to collect any financial help even if your son is legally blind. I believe that they base that on parents income. My boys get TEFRA which is Medicaid for children with disabilities. We were denied insurance due to the albinism. (Which is just stupid)

 I plan on sending them to the School for the Blind for at least the first few years. They already attend the early intervention program there and I have been so impressed. If they do well and they would like to attend regular school later on that would be fine. I have been told that most kids go to school and do okay, I personally feel better about the blind school. Oh their PO told us that they do not need to attend blind school but I see kids with albinism at the school and they are thriving.

wow.. I cant believe you were denied insurance b/c of the Albinism!  Crazy insurance companies!  

Thanks for all of your input.   I appreciate everyone's reply's.  We are looking forward to his next appointment!   

Hi there,

Both of my boys who have Ocular Albinism have been in public schools. Honestly, except for some accomodations that have been made, they are totally "normal" boys. Actually they have both been in the gifted and talented programs throughout most of their school years. They prefer not to be 'different' so for them regular school and classrooms were definitely the way to go. My oldest is now in his first year of college and my youngest in 8th grade. We were fortunate to have a wonderful TVI (Teacher of the Visually Impaired) and also very caring teachers along the way. That is so key. My children also learned early on to advocate for themselves.

As far as financial services. My oldest qualifed for SSI for a very short time when he was about 3. We had just moved and my husband also had recently been laid off. They are very strict about the income guidelines. You really can't make much money or have many assets. They wouldn't qualify now as they are not "legally blind" by definition (20/200 or worse), but when they're young, they really can't give an accurate acuity reading so it was really a benefit to hear such a scary term.

i don't qualify for SSI based on my albinism, but i do for other disabilities. 

I was supposed to be in G&T, but i couldn't read the books so I didn't get to.

 my school didn't really take care of visually impaired kids well...as i was the only one.

Hi,

I have OCA too.  My mum found out at birth - reckon the white hair was a giveaway :-)

I went to regular schools, was statemented from when I started - basically means I was assessed regularly to make sure I was getting as much help as possible and was coping.  Although, I didn't really get that much help in school if I'm honest but the fact that the statementing didn't work is by the by really. 

I did go to specialist college but that was my choice because I fancied living away from home.  :-)

Katie

 Cheryl,

I recieved all the during the time I was growing up.  I attended a head start program from roughly the between the ages of three and five years old. Then I continued recieving special education services the rest of the time I was was in public school. We believe that my vision would have been to good to warrant attending a school for the Blind. Even if my parents found that I would have qualified to attend the school for the blind at from preschool to through elementary school they would have had to send to  the Perkins School for the blind in Watertown MA because there really wasn't a good school for the blind in Connecticut. My mom had considered sending me to the Utah School for the Blind my last two years of high school because she didn't think I would have qualified to attend the school.

Janice,

Is your oldest living at home and commuting to the college or does he live on the college campus? If it's the second thing then he might qualify for ssi.

darcy,

unless you are working you should qualify for SSI because on being legally blind. I've been getting SSI since the age of 18. I've recieved SSI from three different states with in that time. I recieved it for the ages for 18 through 21 almost 22 while I living in Utah. From twenty-two to twenty four while I was living in Vermont. From ages for twenty-four to almost twenty-seven in New York.
 

Cheryl,

I was diagnosed with OCA1 from birth, the white cotton-like hair was a dead give away. I was given glasses at the ripe old age of one and a half but received no vision therapy or other assistance as it was not abailiable over 35yrs ago in the former communist Yugoslavia. The only thing I had going for me was the fact that my mom was a teacher for the blind and had previous knowledge and some experience with albinism so she was my advocate.

When I started school, my parents enrolled me in a regular school that happened to have a class for the visually impaired. I absolutely thrived in that enviroment, but when we moved to Canada, there was no such class so I attended a regular class. As the print became smaller in books in the higher grades I started using a magnifyer and SOME of the teachers (those that didn't feel inconvenienced) would actually let me have copies of their notes before putting them on the blackboard.

I am legally blind 20/200, however I've never received any kind of financial assistance other than Income tax dissability write-offs. I guess I was not considered poor enough of disabled enough. I found that I was too blind for the sighted world and too sighted for the blind world.

The kids with albinism nowdays are at an advantage because of NOAH, and other services availiable out there.

I do like the idea of a special class for the visually impaired in a regular school where the kids could learn more comfortably in a better suited environment for them, yet still have all the other benefits of a regular school. Who knows maybe someone will think it's actually a good idea after reading this thread and implement it.

Anyway, I'm rambling on. I hope you find all the help you need and remember, take one day at a time.

Blessings,

Morana 

My son is starting 2nd grade this fall. He has been in public school and is doing great.  He has a vision educator that checks on him, answers questions for the teacher, and provides appropriate vision aides. I will say though, as a parent you must be very involved with the teacher.  You will know your child best and can give the most accurate explanations of his vision.  None of my son's teachers so far have ever taught a child with Albinism. Honestly, they never even realized people with Albinism have low vision.  I give them a lot of information at the beginning of the year.  Some teachers are better at it than others. Before my son started started at his elementary school, I went in and spoke with the principal.I told her Andrew would need a teacher who is organized, creative and flexible due to his vision needs.  Every year she chooses the teacher that she thinks has the characteristics he needs to be successful. 

thats a wonderful idea! thanks!

Hi,

 A bit of advice that relates to helping all of your children, not just the ones with albinism! 

 I am a 57 year old mom of thrree daughters and grandma of three grandsons.  I am the one with OCA1a, the rest have normal pigmentation and vision.  My middle daughter has an emothional disability and my youngest had a slight speech delay when she was in early elementary schoolo--just a couple of certain sounds.  So I went down the IEP route with them--always a challenge.

 As for deciding amongst a public, private or school for the blind.  This will end up being an individual decision and the same answer doesn't apply to everyone.  Children are not all the same, neither are school districts, teachers of the visually impaired, docters, etc.  The answer of which school your child should attend may change over time to meet their needs.

 That said, I am in a rather unique position as to how I was educated back in the 60s and 70s.  I got to sample several options.

 I started kindergarten two months before I turned 5 in 1964.  From kindergarten through third grade, I was educated at our neighborhood schoo with no extra help other than my mom going in and tlalking to the principal and teachers about what I needed--to sit in front, etc.  For the most part it worked as I  did very well in school.  Of course, this was long before IEPS were the law.  However, not all teachers appreciate parents always telling them how to treat their child--I think some see ity as you questioning their teaching skills.  It is like anything else, the 'experts' seem to think they knopw what is best because they have the education.  Which isn't always the case.  It did help that mom was a substitute teacher in the district, though.

 My brother, two years younger than me, didn't do as well in early elementary school.  Part of it I think was what I sometimes call the boy thing---he just didn't want to go to school.  By the middle of first grade, he was sent to a school in Milwaukee (we live in a suburb--Cudahy) which had a class for the visually impaired.  It was referred to as a "Sight'saving'class", but was really more of a resource room.  So in fourth grad, I also went there.  There were acvtually two classes--one for first through third, the other fourth through sixth.  About ten kids in each of these two.  We werre in regular classes most of the time--how much depended on the individual somewhat.  We went to the resource room for reading--large print books were readily available, for study time at least some of the time, and to take tests.  There was a special copy machine in there where our teacher could make darker copies of things.  There were some visual aids like magnifiers, also.  ept that they were specially made to type in a large font!  The teacher helped us learn to advocate for ourselves in the regular classroom etc.  Mrs. Hermann, our teacher in the fourht through sixth grade room, was a fabulous lady--I remained in touch with her until just a few years ago. 

 Mrs. Hermann recommended that I return to our local school district for junior high in seventh grade.  I attended that school through ninth grade, as was the custom then.  Again, I did well, with little accomodations.  Getting to sit in front, which really didn't help in most cases, some large print books, which I kept at home and didn't use because the page numbers didn't coincide and the pictures and diagrams were lacking.  We had a very understanding principal--I had an advantage the first day of school over the other kids in seventh grade!  I got to go in the week before and he gave me my schedule and we walked through the school with it and found the classes.  I already knew the layout of the school and was one up on the others!!

 My brother did not go to school there.  He was sent to the school for the blind in seventh grade ( he was two years behind me in school).  So, in tenth grade, when I would have gone to the high school, I too went to the school for the blind.  I graduated from there in 1977--the year IEPS became law I believe!  The superiontendent fglat out tould me a month bfore I graduated his reasons for agreeing to my attendance at the school for the blind and what he would have recommended now that there were IEPS.  I wanted to be involved in EVERYTHING when I was in school and wasn't always allowed to in my local school district.  Not necessarily a blatant no, but like not being picked for parts in a play and stuff like that when I was more than capable.  At the blind school I got to try everything.  He admitted that at the time it wasn't agood academic fit for me.  With an IEP, I would have stayed in my home district, with a resource person who checked with me once or twice a week for an hour or so to make sure I was getting what I needed, since I was well able to tell others what that was.

 I think that schools for the blind have lots to offer, often only as a short term placement thesed days-- a semester or a year.  Training with different visual aids, mobility--not necessarily using a cane, but learninig safe ways to travel and how to travel without driving--not all of us will be able to drive.  Also Braille.  Nowadays, many of the schools for the blind work more closely with the local school districs, providing advice and resources.  The long term placements are usually students with other issues besides a visual impairment.  Sometimes it is children whose home district just can't (I'm not saying won't) provide what is appropriate for the child.  Also, there are children, although I doubt it would every be anyone on these bouards!--whose parents just don't have the skills to give their disabled (Iknow some of you don't like that word) children the education they need, in and out of school.

Make the decision that is right for your child when the time comes, and don't be afraid to change courses if the need arises.  You want the best outcome in the long run and each of your children is unique.  I ended up with a BS degree in biology with a minor in math.  Of course, life took some interesting turns and I am not using that education at the moment.  But it is still mine and I accomplished it  and it can't be taken away.

One last bit of advice in this long rant... One of the most surefire way to help your children in school and know what is really going on there and who the best teachers are, as well as get help willingly from them, is to be a volunteer at your child's school.  I don't  mean you have to volunteer in your child's class, sometimes that can backfire, or be the PTA president, unless you choose to, but there are so many things that need doing at the schools.  A couple of hours a month can make a huge difference.  Most of the younger grades need people to do things like tear the pages out of the consumeable textbooks--like the math books, as you don't give first graders entire math workbooks if you want them to pay attention to learning to add one plus one!  You can be the person who collects and counts the Campbells soup labels and the General MIlls boxtops for eduacation logos.  You can help with the fundraisers, the school carnival or fun night, whatever suits you.  Your help will be appreciated tremendouslyand in return you are seen as an overall involved parent, not just one who shows up at school when their child needs something or something isn't going well.  Don't take offense to that statement, it isn't directed at any of you.  There are plenty of parents out there aof children without a disability who do this as well.  By bolunteering, you will make allies of the teachers and principal and be seen as a true partner in your child's education.  It will make getting your child an appropriate education so much easier!

 Thanks for taking the time to read this and good luck with your decisions, whichever path you may choose.

Joni

Hi Cheryl,

 I have albinism and the associated low vision, and I went to public school and would HIGHLY recommend it.  At one point during junior high, my parents allowed a low-vision to work with me a little bit during school, but that lady actually CAUSED me to FALL BEHIND in my classes because she treated me like I was mentally impaired.  I stopped going after a month, and my parents were completely supportive.  I was in honors and gifted classes through high school, graduated from college, and now have a law degree and a Ph.D. 

I've spoken with several mobility trainers and those in similar positions who work with persons with albinism and it has really angered me.  There seems to be a desire by some of these programs and workers to lull their students into complacency with regard to their skills, abilities, and everyday functioning.