One very angry and frustrated mother......of a teenage girl

Many people on this board have good things to say about vision therapy. Search the bulletin boards for the key words vision therapy and VT and read up on others’ experiences. From my reading I gather that the skill of the provider is all-important; some very successful and some a waste fo money and time. There is a poster, Rod, who claims very good results for many of his students — many like your daughter. You can look him up in the memberlist at the top of the page and see if he has registered to receive private messages (pm) or emails. He has given positive suggestions to other parents in your situation. There is also a mother, LindaF , whose son was in some ways similar to your daughter. She might also be able to give you guidance.

There are two websites often mentioned, covd.org and childrensvision.org
I know nothing about these sites and am just giving them to you as places to look — buyer beware and please watch for knowledge and experience in this new, experimental, and not very regulated field.

There is also a home vision therapy CD and a book — LindaF knows about these things. Home work is likely to be less effective in a given time, but much cheaper and easier to keep up with if you are determined.

There are other therapies such as Audiblox and Interactive Metronome that people have found helpful. Again LindaF has experience with IM and speaks highly of it, Audiblox has a website. I understand that AB requires a dedication to daily practice over a long period of time, several months at least, but the people who have stuck to it claim excellent results, and it is relatively inexpensive.

That gives you lots of places to start looking! Good luck and feel free to ask me for more info.

I know exactly what you mean. I expected that the SCHOOL would know how to teach my child…well, I learned the same lesson you have! Not quite as hard a lesson, but enough to understand your rage.

Don’t worry too much about the ‘window for remediation’. As a former adult literacy tutor, I would say that adults have an advantage over children in their determination and ability to work WITH the remediation. Children may have greater ability to absorb new knowledge…but don’t let your daughter’s age slow you down. She is still pretty young, and perhaps now will be able to help you track down the best ways to help her overcome her difficulties. Share your anger with her! A healthy suspicion of ‘expert opinions’ is a life skill, IMO.

I have little faith in the current ‘diagnoses’ related to learning and behaviour problems — I feel that in future, we will learn much more about the cluster of symptoms we term ‘adhd’; ‘add’ ‘nvld’ ‘capd’ etc., and perhaps enough to make our present beliefs and responses to these symptoms seem ludicrous…as my grandad would say, ‘LORD, deliver us from the “experts”!’ Sometimes an informed layman with parental motivation (have you ever seen ‘Lorenzo’s Oil’ with Nick Nolte and Susan Sarandon?) can cut through the established knowledge of the ‘experts’ to see the truth…a truth that would never have been found by the experts who are so sure of their own infallibility.

Best wishes to you…I look forward to hearing about your discoveries, your journey, and your daughter’s future achievements!

[quote=”Elizabeth TO”] Sometimes an informed layman with parental motivation (have you ever seen ‘Lorenzo’s Oil’ with Nick Nolte and Susan Sarandon?) can cut through the established knowledge of the ‘experts’ to see the truth…a truth that would never have been found by the experts who are so sure of their own infallibility.

![/quote]

Contrary to the message portrayed by the movie, Lorenzo’s Oil did not turn out to be a lifesaver or even to work very well to slow the progress of the disease. The real proof of all treatments is whether their effectiveness can be objectively demonstrated across a wide body of people with the same diagnosis and symptoms. Lorenzo’s parents credit the oil with preserving his life and indeed, he is still alive, although stilll in a vegetative state. Other parents who hoped for the same miracle that Lorenzo’s parents saw did not receive it. We are still in the very beginning of understanding LD, ADHD, etc. Some parents may have the time and the resources to try alternative approaches; some may have tried traditional methods and not found relief. The important point is that we must educate ourselves thoroughly and undertake therapies with as complete an understanding as we can acquire. That means, I’m sorry to say, that what other parents report to us about the success of a particular treatment should be only one, not very important , part of the analysis.

For the mom of the teen with NLD, does your daughter have social skills problems? She might benefit from training in that area. Also, checkout www.nldline.org, for good information, access to research and support from parents who understand what you are going through.

You are corct the Lorenzo’s Oil is not a cure for ALD.. however it has been found to be remakably effective as a preventive agent for those boys with the genetic defect who have not yet seen damage to the myelin sheath. Lorenzo’s Oil also has not been found to help any of the other affliction which are traced to myelin problems (one example is MS).

http://news.bbc.co.uk/1/hi/health/3907559.stm

Melmom, I understand full well your frustration, outrage and anger at the powers that be who put you off, brush you aside or often seem to be clueless. That is one of the reasons I am so vocal about potential treatments fo autism, regardless of their “proven” status. Sometimes when scientists structure a study, they miss vital elements and ask the wrong question. Sometimes they miss the synergy between multiple variables as they focus on testing individual components. And sometimes they just plain miss the boat completely.

What I find most distressing is the often systemic lack of quality information that makes us parents continually reinvent the dang wheel, very often at a time when we are under a great deal of stress caring for our difficult children, trying to live some semblance of a normal life AND having to repeatedly claw and scratch for crumbs from social service providers who should be assisting us, not hindering.

Congratulations for taking things into your own hands!

Seeing double indicates a convergence problem. I would definitely take her to a developmental optometrist for a developmental vision evaluation. See http://www.childrensvision.com for more information, and http://www.covd.org to find board-certified developmental optometrists in your area. Vision therapy can be expensive so, if you are on a budget, be sure to either (1) ask before making the evaluation appointment if the optometrist would be willing to design a primarily home-based program of vision therapy (if it is needed) in order to keep costs down, or (2) go to http://www.homevisiontherapy.com and use one of the optometrists on that website (preferably one who is also board-certified by COVD). These are optometrists licensed to dispense computer software for vision therapy. Cost of the pre-testing, software, and post-testing is usually under $300. This software does not correct all developmental vision problems, but is very helpful for some of the most common ones (such as convergence).

I would probably also get an occupational therapy evaluation. This is usually covered by medical insurance with a referral from your doctor.

Audiblox (http://www.audiblox2000.com ) and BrainSkills (http://www.brainskills.com ) are home programs that work on developing processing skills. PACE (http://www.processingskills.com ) is a provider-based program. These are excellent programs, but you really need to correct any sensory-level problems (such as visual efficiency deficits or sensory integration disorder) as much as possible before starting them. That’s why I recommend getting a developmental vision evaluation and an occupational therapy evaluation first.

Nancy

….I will email Rod and try to contact Linda forthwith. I have to tell you though, I am loathe to trust local “professionals,” anymore at all. I don’t have alot of faith in their dx, and, after my experiences in the last 15 years, I think that it is a valid outlook.

Someone here in the forum asked about social problems. Oh, where shall I start: This post is a lengthy one but I feel that those parents of 4 and 5 year olds need to know from someone that has been where they have been—that just because their child struggles so now, does not mean that they will never succeed. It isn’t over until it is over—don’t ever give up, as dismal as it may look now. To answer the one post’s query: Yes, she had and has massive social problems–she lied pretty compulsively and told “whoppers ” from a young age until just last year at about the age of 14. She seemed to use that as a way to cope with her poor self-image. In other words, she knew that she was “different,” from a very young age. It was her adaptive social and academic coping mechanism—but even that was inept. She started this from about the age of 5—when I took her to the “professionals,” they told me that she didn’t understand the difference between fantasy and reality—they used this excuse until they couldn’t say that anymore at about age nine—then it was my fault. Brushing my objections aside—insisting yet again, that I was a nervous first time mother and now I was neurotic, to boot. This caused problems in my relationship with my daughter because honesty is a real sticking point with me. At first, I was probably harder on her than I should have been because I half-believed the professionals—that I was the problem—I wasn’t there long enough—lack of consistency, etc. As the years went on, I finally got that this was, for her, at least, a developmental phase—as strange as it sounds. She does, by and large, seem to have outgrown the problem. Over the years, I just kept repeating, over and over and over, how important honesty was and trying to consequence her in small, relatively painless ways, every time that she lied—so the fact that she lied was acknowleged without destroying her. When possible, in social situations, I would let her stand the consequences of her behavior without coming to her rescue. As she grew older, in puberty, this led to some pretty dramatic outbursts from her—but it taught her that lying has consequences. Then I would add an extra chore, or we would spend an afternoon at home rather than going to the playground, or not rent that movie over the weekend. It is only within the last two years that she is finally getting that lies hurt everyone involved—Not telling the truth impacts how other people see you and casts the person who lies in an unfavorable light with their peers. When you hear about peer influence—it is usually negative. No one ever points out that it can also be a very strong, positive motivator for kids with neurological problems—depending on whom they like to “hang” with. My daughter and I are extremely fortunate that she seems to choose healthy peers to socialize with.

She was speech delayed and when she finally developed enough skills to carry on a conversation—say at a family gathering, she talked “out in left field”—topics that had nothing to do with what the current conversational thrust. I tried to look past it and ignore it—so did my family—trying to correct her over it might have devastated her self-confidence—she may have quite trying. I tried to point out the good stuff when she was “right on target.” Eventually, and slowly–it got better. She need to practice this skill over and over and over—she was and is severely delayed socially. She is doing much better than she was, however. It is less and less noticeable—but still there—definitely still there—in subtle ways. Listening to her “interpretation” of a social exchange is one way of identifying it—she cannot always reach the conclusion that you or I might . However, it is an improvement from the way-off-base stuff that she used to come up with—she is at least in the ballpark, now—I just need to get her into the game.

Trying to offer reinforcement in a positive fashion is important—even now. Sometime, over the last month or so, we were deeply engaged in yet another conversation about my shortcomings and how they were the source of the conflict between us. (Please bear in mind that the only conflict between us is the classic mother/teenage daughter drama queen thing with some interesting twists because of her attendant neurological dysfunctions and my lack of patience.) She said how she is “down” all the time (again, an exaggeration) and how she feels I am too controlling (with her problems, I have to be right on top of her because her interpretation of social interaction is sometimes wonky), and she ends up feeling like she can’t do anything right and she is ready to quit trying (again—BIG drama). I told her that it was really a shame because over the years, she has made tremendous improvement—mostly due to her incredible optimism and buoyant personality. I pointed out that even though she is not always successful the first time, she keeps trying and perservance will always solve more problems than ability will. She was quiet for a moment as she processed this information—seemed to make her feel better. My point here, is that encouragement and the parents presenting a calm perspective is important—the kid needs to know that the parent has faith in them and their efforts—she seemed to find it reassuring—when everything else in an adolescent’s life is in a state of flux—the parents are the solid reality. She even tells me now—“Mom, I am going to make mistakes—it will be okay.”