Already getting the run around.....

Wow, amazing that there is such a demand that that many LD schools can actually stay afloat! What a dream to have that many from which to choose!

Janis

Wow, that’s interesting. I’ll ask his doctor about it although, from what I hear you saying, the doctor is not going to endorse therapy of any kind. She’s never mentioned it before and neither has the Retina Foundation. Is it new? I remember her saying the medical community hasn’t even determined if Duane’s is a muscle problem or a neurological problem - a bad signal from the brain. It’s so rare they don’t know that much about it, she said. The surgery involves cutting the muscle so it has a bit more freedom, but the problem can’t be corrected. He has to have the surgery every few years bec it tightens up again. Many people confuse it with lazy eye but that’s not what it is.

I appreciate the input!

Again, sorry about earlier. I live in the Interrupt Mode and sometimes I come across as abrupt when I’m really just in a hurry!

Laura

Maybe the attendance requirements are different here for public school, but if my son missed a half day of school every day for months he would be considered truant and I’d be in truancy court writing a check! Maybe we’re nutty about attendance here bec the state school ratings are based on test scores and attendance. Or maybe it is that rule were the student has to be present so many days to be promoted. I can’t remember what they said. I have heard one parent who tried to have their kid attend LMB (at their expense) and have it written into their IEP, but the school still refused to excuse the absences.

LMB told me they have parents who withdraw their kids from public school during the time they attend LMD and then re-enroll them. I work, so that’s not possible.

Laura

Surgeon’s won’t endorse therapy. I worked with surgeons for years. I have great respect for them but there is a certain amount of tunnel vision that goes on when it comes to different approaches. Happens all over medicine. There is alot of territorial stuff that goes on.
It certainly isn’t new. My son’s optometrist has been doing this for 40 years.

He really understands learning disabilities better than anyone I have ever met. Even the people I have met on this board could learn from him which says alot because the people here are the best and the brightest.

I am not familiar with Duane’s. I am sure this doctor is. I wish you lived in New Jersey.

I don’t know if all optometrists are this good. I might just be lucky.
My husband has unremediated vision issues. He suffers for it. I wish he received therapy when he was young.

My son loves to read. My husband just doesn’t and probably never will. He is very successful despite this issue but he works very hard.

Well, schools will tell you what they want. I pulled my son out of public school part time in second grade after they failed to provide him with an appropriate education. I was ganged up on in an IEP meeting and threatened with a social worker visiting my home if I did it. I read the law—it defined truancy as excessive absences not tardiness (I was taking my son in at 10 am). So I wrote the prinicipal a very polite letter asking exactly where truancy was legally defined as excessive tardiness. She called me back and told me basically they couldn’t stop me—that it had gone all the way to the school board lawyers!!!!

I learned from the principal that the reason they want you to withdraw your child because if they are on an IEP and make progress they could be legally liable for the expense.

I actually would have pulled him out full time but couldn’t because I also work.

Beth

If he’s not parent bashing or Ritalin bashing he’s teacher bashing. Ball has made this an unsafe place.

Is this really Linda F, or is it Ball and friends out to make more trouble by playing both sides of a fight and filling up the board?

If this is Linda, please go back and re-read the post — yes, there are some complaints about teachers there, but nothing more than you and I have said in our various ways. We all know that there are a lot of misinformed teachers out there, and not all of them want to improve. Honest complaints are part of the reason for a board like this.

If this is Ball and sycophants, this is truly boring. We have your number and I’ve known for a long time what to do about bullies.

Can you tell me something about Duane’s Syndrome, what it is and what the symptoms look like in general?

I am particularly interested because you mentioned the Retina Foundation. My daughter has some sort of a retinal problem, never named or clearly defined, that limits her vision in odd ways, and I’d like to find out if this is similar, and if there is anything to do. Thank you.

nt

Victoria -

Duane’s Syndrome is a congential thing that, in my son’s case, means his left eye can’t move to the left. He has full control of it in any other direction, just not left. Before surgery he couldn’t move it center. I noticed it right after birth but was, of course, blown off by my pedi until he was 5 months old. “All infant’s eyes don’t seem right, ” he said. But I kept saying, No, I have never seen his left eye look left. Instead my son would keep his head turned in order to see straight ahead. We have hundreds of baby pictures where you see his right ear but not his left bec his head is turned. Finally, the pedi agreed with me and referred me to the big pedi ophthalmology practice in the city. The doctor knew exactly what it was immediately. She says she sees about 1 patient a week with Duane’s. She gave me a flyer from the Retina Foundation bec they are always looking for Duane’s Syndrome patients to experiment with. He’s done quite a few studies there over the course of his life. He has surgery to give that eye a bit more freedom and to stop or improve the head turning. A lifetime of head turning can lead to neck problems, she said. There is nothing wrong with his vision.

The Retina Foundation studies all eye issues, but Duane’s is the only one I can help them with. If it’s a paid study I let my son keep the money.

It doesn’t sound like what you are dealing with, huh?

No, it’s my brother who had the “rolling eye” — rolled right to the bridge of his nose and he had no control over it. He’s had glasses since he was nine *months* old to correct this, and they worked quite well. It used to be truly weird to see him take off his glasses and the eye roll down.

My daiughter has a bizarre thing with her retinas that nobody has ever named or understood much. It developed or at least worsened after a couple of serious illnesses so I wonder if fevers caused the damage, but we don’t know. She seemed to lose a lot of her eyesight for a while; zero night vision, poor distance vision, inability to see low contrast (faded purple dittos are a nightmare). Glasses were no help at all as the problem was in the retina, not the focusing; she wore them for a year because the teachers forced her to, and then our eye doctor threw them in the garbage. I was wondering if it was time to teach her Braille. Then with returning health a lot of the vision came back, but never to quite normal. She says that she sees the edges of things fuzzy all the time. She cannot see spiderwebs — too fine. (She’s an excellent reader however — I taught her and she never knew it was supposed to be difficult) Also, she could never differentiate between greys and browns and purples, although the rest of her colour vision is good to excellent.

If you are talking to any experts in the vision field, I would really appreciate it if you would ask about this and pass on any info you find out. You can save my email if you’re more organized than I am. Thanks.

We left school at 1:00 2 x/wkly for all of 2nd grade. My child learned to READ! The school said, “We can’t condone it, but we can’t stop you”. In about 4 wks she was reading F-or-d off the back of a pickup truck. I didn’t know whether to laugh or cry. 1) Guilt for not realizing she couldn’t do this before (she was 7years old) and 2) relief that she could DO it.