Frequently Asked Questions
On Blindness and FEVR
- What is FEVR?
- Why did you have so many visually impaired kids?
- Why do you recommend everybody to see Dr. Trese and/or his associates? How do we do this?
- Why do you homeschool?
- What curriculum do you use?
- Isn’t it time-consuming?
- How do you homeschool blind children? Don’t you need professionals from the schools to do that?
These are all real, live questions from real, live people, most of them asked at least once every day. In case you can’t tell, they are really starting to get on our nerves. We would definitely recommend not saying any of the following to any triplets/parents you may meet:
- Are they twins?
- I bet you have your hands full!
- Do you really have three babies in that stroller?
- Are they all yours?
- Are all three triplets?
- I’ve never seen triplets before!
- I’ve never seen a triplet stroller before!
- Are they all different sexes?
- Are they all boys?
- Two boys and a girl?
- How do you manage?
- Did you know you were going to have triplets?
- Do triplets run in your family?
- Were you on drugs?
- Were you on fertility drugs?
- Do they all sleep at the same time?
FEVR stands for Familial Exudative Vitreo-Retinopathy. It is pronounced like “fever”. FEVR is a genetic disease affecting the growth of the blood vessels in the retina. Various gene mutations, with all the different heredity patterns, cause disruptions in the signaling pathway for growing new blood vessels. This causes some blood vessels to grow uncontrollably and others not to grow at all, leading to a huge variety of eye problems, ranging from a little nearsightedness to total blindness. It is a progressive, life-long condition, with the risk always present for future vision loss, although new treatments have reduced this risk a little.
Well, we certainly didn’t set out to. We asked doctors whether Brian’s eyes were caused by a genetic problem when we started our family, and we were told absolutely not, there was no chance of it whatsoever. We didn’t find out that our family has FEVR until our sixth child was born with severely affected eyes. At that point, they realized that Brian had been misdiagnosed, and that he and four of our children have FEVR.
Dr. Trese, along with his associates Drs. Capone and Drenser, are quite simply the world’s leading experts in FEVR. They see more patients with FEVR than any other practice in the world, and they do most (if not all) of the research on this particular disease. Local ophthalmologists and retinal specialists can monitor the disease and do some treatments, but there just is no substitute for seeing the experts. Folks come from around the world for their advice and treatment, even if it’s only once every year or two.
To schedule an appointment for exams in the office or under anesthesia, contact Associated Retinal Consultants at their Royal Oak, MI, office at 248-288-2280. You can ask for the surgery scheduler directly if you know your child needs an exam under anesthesia.
If getting to Michigan just isn’t possible right now, you can still be enrolled in the genetic studies being done by Dr. Drenser. Have your local doctor contact the Royal Oak office to get the information needed. You will need to have blood drawn locally and then sent to the Michigan office for testing. Results come back anywhere from 1 month to 1 year from when they are sent, as the tests are done in large batches to save on cost.
We homeschool for a lot of reasons. Probably the biggest, and the one that first led us down this path, was our personal experience with the government school system. Brian grew up as the only blind kid most of the time, and endured ridicule and bullying for a very long time. Elayne grew up as the pudgy geek, and put up with her own set of bullies. In addition, we saw problems with getting our needs met, with lack of accommodations, lack of access to an appropriate level of education, and deliberate holding back. These are things we want to avoid for our children, and led Elayne in particular to consider homeschooling before she even left school herself. As adults, we have also come to believe that government is not the best provider of educational services, and that the government should not be involved in education nearly to the extent that it is today. We do not want our children politically indoctrinated, we do not want them held back to a uniformly low standard, and we do not want to encourage them to conform and just go along with authority.
In short, we want our children to learn to think, reason, and research independently, to interact with the real world with real people of all ages, to question authority and follow their own path.
Our homeschooling style and curriculum has changed over the years.
We started out following the curriculum outlined in The Well-Trained Mind, with some modifications. We didn’t follow organized science programs in the elementary years, instead following paths of curiosity and answering questions about the world as they arose, which still seems to work well for us. We have not done much second language work, and probably will not as we shift our focus to Braille for the younger children. We used the computer a bit more and handwrote a bit less than recommended. We did steer clear of highly-Christian books for the most part, but we did find Voyages in English and Story of the World to be acceptable.
After Elayne’s mother had cancer, our schedule got disrupted, and we couldn’t seem to get back on track. We continued with our Q&A sessions, constant learning about the world, and we started using Khan Academy for math. Khan Academy was fun because it assigned points, so we could put the kids into a contest to make them want to work harder, and it also allowed each of the kids to work at their own level, pretty independently.
In 2013, we decided we needed to get back to a more structured curriculum, but going back to the Well-Trained Mind didn’t seem like a good idea. Instead, we chose to go with Oak Meadow, a Waldorf-inspired complete homeschool curriculum that seemed well-adapted to both our blind and our autistic children. So far, it seems to be working well. Being able to buy everything in a single set, and have the different subjects coordinate, is a big plus. For example, the older kids will read one book, and do both social studies and english assignments with it. Also, it provides a lot more structure and ideas for creative work with the younger children.
Not at all. Well, maybe a bit for me, but only because I’m trying to do 6 at once! The children, when they sit down and focus, only need to spend 2-3 hours each day on their assignments. This is less than half the time they would spend cooped up in a schoolroom under government education. The rest of the day is theirs to spend being children, playing games and running around getting in trouble.
Most of the skills of blindness can be learned by trial-and-error (blindfold yourself and try to do something), through books and resources readily available online and at the library, or just by asking a competent blind adult. We have a competent blind adult in the family, and another as a close friend. Blindness skills can be taught easily through everyday living, just as we teach our sighted children how to do things and how to get around. The most difficult skills to teach and learn are cane technique and Braille. Elayne is studying both of these, but we also seek out professional assistance in these areas, much as you might get a piano teacher or a skating coach to teach a child those specialized skills.
No. (Where does this question come from? People who can’t count?)
I bet you think you’re original, don’t you?
No. It’s only two babies and a doll. I’m psychotic and just think they’re three babies.
Nope, I’m just masochistic, I like taking lots of babies everywhere I go.
No. I get my kicks off of dressing up other people’s children like my own.
Neither have I.
Neither have I.
Yes, that’s right, we have one boy, one girl, and one alien.
Yup. We really wanted some girls, though, so we dress a couple in pink hoping they’ll change their minds.
That’s right, two drag queens and one bull dyke.
Nobody ever asks us if they’re all girls, though, or even two girls and a boy. Feel free to if you see us.
I’m not sure. My memory is pretty fuzzy right now. Could you pass me another drink? I need to take my medication now.
Nope. My weight gain and size had the doctors completely mystified, and the ultrasound didn’t show a darn thing. They never could figure out which lump was the head.
Yup. We had this planned from the beginning. We went to the doc and said, “Ok, we want to have three babies at once. Don’t mind the leather and chains; we’re into sado-masochism.”
They do now.
Not before, but I sure do need them now. What have you got on you?
Do you want the long answer or the short one? Because by asking the question, you don’t seem to understand the true risks involved in fertility treatment. In fact, yes, I was on fertility drugs. It was the lowest-level, least effective “fertility” drug on the market. I was also given a less than 5% chance of having twins. Triplets were never mentioned. If you think I should have been expecting this, think again. And how were your children conceived?
This question made a little more sense the first year; after 16 months or so it started to seem a little insane. If they weren’t sleeping together at some point, they would need to have some serious health problems.