My child needs help. I don't know what to do. Please help.

My daughter has just entered 4th grade and she is struggling from the start.

She has dyslexia. She can read, but it is a struggle for her. I suspect she is about 2 years behind.

I want to get help for her but I don't know who I can turn to, or who I can trust.

My older daughter has ADD. We took her to all kinds of doctors and neurologists (many who were not covered by my insurance) and we spent thousands. In the end, a little medication and some maturity was all that it took to get her on track. The experience has left me feeling that there are lots of people out there with good creditials who are more then willing to take your money, but don't really know if they can help you - and worst of all - they can drain precious time and resources stringing you along for months.

For my younger daughter, I have addressed the situation by being very hands-on. I've read books about dyslexia and applied their techniques - but I know I am not an expert. I have her read to me aloud every night for 20 minutes - above and beyond her homework, and I read to her every night for about 1/2 hour. She has developed a love for books, but she hates reading, and this has only made her feel more frustrated. I saw some progress with her last year, but progress seems to have stopped and I don't feel her school is giving her all the help she is entitled to - and I can't demand things, when I don't know what is needed.

Now precious time has been lost and I've mishandled the problem. She is in the 4th grade and I feel I have not been doing the most effective things I should have been doing, and it's making me feel both desperate and discouraged.

MY GOAL:

We live in Bergen County, Northern NJ. We are not far from NYC. I need to find an expert - someone I feel I can trust. In essense, someone with a good reputation and a long track record of success. I want to get my daughter into some kind of program that identifies her dyslexia issues clearly, addresses those issues with proven methods that work, monitors the progress on a monthly basis, and can demonstrate consistent improvement. Ideally, I would like to coodinate this effort with her school so she doesn't feel overwhelmed or miss out on important opportunities in school.

I know I can't be the first parent who has faced these issues.

I'm sure many of you reading this have felt the same way. If you know anything, have any good advice, or you know anyone who can help me, please post. It will be appreciated.

Thanks,
Rickrun
[Modified by: RickRun on September 23, 2009 11:45 AM]

I live in a house full of dyslexics and each of them is very different. Unfortunately dyslexia is a fairly broad term. There can be a couple of different forms of dyslexia and there can be other visual issues that can make it worse.

My son benefitted from visual therapy. He knew the "how" of reading but couldn't see the words well enough to apply it. His dylsexia is complicated by double vision from his face to 3 feet away. Once we were able to get his vision improved his reading took off.

My husband never got help and his reading continues to be slow and painful although he can read at a high level. Reading is not something he really enjoys for long periods of time.

My daughter has 2 forms of dyslexia - diseidetic and disphonetic. Diseidetic is the well known form where letters in a word are mixed up or switched. Disphonetic is an auditory form of dyslexia which effects how she hears words when they are sounded out. To complicated her dyslexia even further she also has Irlen Syndrome which causes words on a page to blur and her eyes focus on the white areas between the words. Add visual tracking issues on top of all that and reading was very, very painful. (She now successfully reads at grade level.)

There was no 1 expert for my daughter. It took 4 experts to unravel all the issues and then I had to come up with programs/therapies that worked for her. She went from a 2.4 grade reading level at the end of 6th grade to reading at grade level by the end of her 9th grade year.

Some of the things we did:
Accommodations for the Irlen Syndrome (can be found at http://www.irlen.com)

Text-To-Speech program for reading and tracking (There are free e-text libraries that can be accessed for books)

Earobics and The Listening Program for auditory issues

Found a "high interest" book series that she WANTED to read on her own

9th grade English provided Read180 by Scholastic (highly recommend this program!)

There is always time to learn things. Some people learn them faster, others more slowly. Don't give up the search for what will work for your child.

scifinut mom to: ms 16, bp/adhd/anxiety/complex ld mr. 20, add/dyslexic I hear and I forget I see and I remember I do and I understand. -Anonymous

Hi Rick. I was wondering why you have not approached the school again. Did they identify your daughter with dyslexia first? Has the school tried to help her?
If you meet with her teacher and discuss this with them and tell them how the situation is going it might get the ball rolling. I feel that school is the best place to start because that is where she spends most of her days. You have to advocate for her at school first and see what happens. Adding more work outside of school maybe overwhelming for her. Working with the school resources and reinforing it at home is a great help to her. Also the school maybe able to provide you with the name of someone outside of school that may help her.

Ditto on everything. I have an 11-year-old with dyslexia and ADHD. What you may need is an advocate. You are obviously doing everything you can do to help your child. I don't know if the link below will help, but my suggestion is that you find an organization that provides resources for families that deal with LD. It might take tracking down a phone number and asking if there are advocacy services for parents of children with LD in your state or in NY. In MN we have an organization called PACER that will consult with parents for free. They will help parents understand special ed law, review the child's IEP, and ultimately go to any meeting with the school. I do hope your state has a resource like this for you.

http://www.spannj.org/

When I read your account I realize that it's all the same stuff we deal with. I think we have to continue to advocate for our child as tiresome as that can be and continue to look for other people who will advocate for them as well. By the way I can nearly guarantee that the school is not doing enough, especially if you've never questioned their expertise. Most schools don't know the law and don't understand fully what they have to provide so they never do it.

Also, the advice to visit a developmental optometrist is a good one. We have gone to one and she was able to help quite a bit.

http://www.childrensvision.com/development.htm

Best of luck to you and your child.