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Son recently diagnosed with Dyslexia. Need advice!!

Submitted by an LD OnLine user on

Hi, my name is Marie, and I am new to this board. My 8 year old son has recently been diagnosed with Dyslexia, and I am struggling to find out how to proceed. His school has put him in the Special Ed Program, we have an IEP, but I am concerned. Would he be better off in a school that is geared towards LDs? Can anyone say whether or not their child has suffered any labeling or stigma from the placement in Special Ed? Is outside tutoring specializing in Dyslexia recommended? Basically, where do we go from here?????

Any advice/comments/suggestions would be greatly appreciated. I may be over-reacting, but I really feel like the decisions we make now will effect the rest of my son’s life, and I want to get it right.

Thanks!! Marie

Submitted by KarenN on Thu, 01/13/2005 - 12:50 AM

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Chances are, unless there is something unusual about your son, he will need Orton Gillingham (OG) teaching, or something like it. Multisensory, explicit instruction in how to read. The more he gets of it the better. Many of us here have found that intensive remediation is the most effective.

Each school is different, and in an ideal world you’d be able to remediate his dyslexia in your present school. We couldn’t , so we employed an outside OG tutor. But we found that getting reading instruction 3-5 times a week (between school and tutoring) was insufficient. plus running from a full day of school to a tutor was draining. So we opted to send our son to a private LD school starting in 4th grade. I wish we had done it sooner.

If you have a good program near you it can be a life saver.

Sometimes , depending again on where you live, the board of education can be forced to pay for your private school tuition. If not it can be an expensive, albeit effective , choice.

For my son, his LD goes beyond reading. He needs explicit instruction in writing and organizational/study skills as well. We find that the small class size in his school is important for him. Also being in an environment where he feels understood has been wonderful for his self esteem. He doesn’t feel stigmatized because he understands that he just needs to learn differently, and because his school creates a very “normal” school environment .

But not every child with dyslexia needs a specialized environment . Its very dependent on your child.

Submitted by victoria on Thu, 01/13/2005 - 4:59 AM

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It is an unfortunate, weird but true fact of life that many or most elementary class teachers know very little about effective teaching of reading. The apply programs by rote and hope and pray the kids pick up, not the best method even for those who do pick up some, and a disaster for those who need actual teaching.

Special ed varies; many of the people on this board are special ed teachers who are knowledgeable and hard-working and certainly do get kids reading. Other special ed teachers are uninformed or even misinformed and their schools have bought into programs that are known failures for over a third of all kids, hopeless for those who need good instruction. Poor quality extra “help” can even make the situation worse for him, confusing the reading further and causing frustration to build up.

Yes, what he needs is planned, organized, systematic instruction using direct teaching of decoding (phonics) skills and usually multisensory approaches. Some schools provide this, but many people find they have to get a private tutor. As a private tutor myself, I can recommend to you that if you get someone with knowledge and experience this can be a worthwhile investment.

You can also do some do-it-yourself tutoring if you have more time and dedication than money; feel free to ask me for my collected works on LDOnline if you want to get into home teaching, [email protected]
I am late in getting things sent out this week but hope to get back at it soon.

Submitted by marieprei on Thu, 01/13/2005 - 10:38 PM

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Thank you both so much for getting back to me so quickly. It sounds to me like my son may be a lot like Karen’s son. Reading, writing, and organization are all major hurdles. I want to think we can get everything we need at his current school, as it is really a good school, but I have a sneaky suspicion we can’t. There is a school in Denver (about an hour away) that specialized in LD, and it sounds terrific, but I’m not sure it is feasible. One, the drive, two, the cost. I have spoken to a tutor that specializes in Dyslexia, and will probably start with that.

I appreciate any more information anyone can give me, and look forward to gaining more insight into this situation. Thanks again, Marie-

Submitted by KarenN on Thu, 01/13/2005 - 10:55 PM

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Marie,

I’m thinking that the school you mention might be a good resource for you. Even just going through the admissions proces at my son’s school is valuable. For the cost of making an application you get a full educational evaluation. Often parents find out that their child doesn’t need a special ed. environment, or can get recommendations on very qualified tutors. Often our school is familiar with the various local school districts, because after all that’s where their students have come from. Just a thought.

Bear in mind that we did tutor my son for 2 years in the mainstream, and had done other interventions (speech and OT) before that . By the beginning of 4th grade it was clear he was never going to close the gap that way. You are just beginning , and may find that a good tutor is all you need.

Submitted by victoria on Fri, 01/14/2005 - 12:35 AM

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Just be careful withthe tutor who specializes in dyslexia; some are excellent and really teach reading using appropriate methods, while others sell their own pet programs and teach students how to be good non-readers using every kind of coping skill except reading. Check into the methods and goals before buying.

Submitted by marieprei on Fri, 01/14/2005 - 4:09 AM

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That’s a great point, Karen. I think I will look into that.

Tyler has only recently been officially diagnosed with Dyslexia, but we have been trying things for a while, hoping to hit on the solution to his problems. We honestly didn’t know if he was just “not ready” when he started school, so we held him back in 1st grade. He did it twice. That didn’t work, so we got a tutor. That tutor thought he had an “eye tracking” problem, so we had him tested and started vision therapy. That has helped somewhat, but really didn’t resolve the problems. That was when I pushed the school for official testing. Once that was finally complete, they confirmed his need for Special Ed, and we came up with his IEP. At that point I started polling people in my family and other parents at the school as to their experiences with Special Ed. (several family members are teachers in another state) Many, many people brought back horror stories about the damage done from the “label” of Special Ed. That is where we are now. I am unsure about subjecting Tyler to the “labeling” associated with Special Ed in a regular school environment, that is why I started thinking of schools specifically for LDs. We are talking to a tutor that specializes in Dyslexia, but having done the tutoring thing once, I’m just not sure it is enough. Does anyone know if Montessori or Waldorf methods address LDs?

This is a long message. Sorry. I really appreciate the great hints, though. It really helps to hear from other people that have dealt with the same things. Thanks again, Marie-

Submitted by marieprei on Fri, 01/14/2005 - 4:15 AM

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Hi, Victoria-

Do you have suggestions on methods? I have a book I have been reading that describes, briefly, some of the popular methods, but that is all I know of them. It would be great to have some experienced input on which methods tend to work better than others. As you say, there are a lot of “pet methods” out there, and I don’t want to waste time, effort, and money on those.

Thanks for your responses. I can’t tell you how much it means… Marie-

Submitted by victoria on Fri, 01/14/2005 - 10:48 AM

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Marie — I have saved down a bunch of old posts, my collected works on LDOnline, now a book in progress, and in these I describe generally effective methods of teaching reading. These methods are not dependent on any one book or brand name, but are general approaches to use with a variety of materials. I also list in the first general outline post some references for further info on what works. If you want copies of these posts, just email me at [email protected]
I missed sending out posts last weekend but hope to get at it shortly.

Submitted by KarenN on Fri, 01/14/2005 - 12:49 PM

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Marie,
Your story is similar to ours in many ways. We also tried a variety of therapies to address issues we saw, before we knew that it would become an academic “crisis.”

I can’t comment on what being special ed. in a regular public school feels like because that wasn’t our situation. Our son was already in a regular private school (very common where we lived) so there simply wasn’t special ed. or any services within the school except for reading support. Getting pulled out for reading was not a bad thing in 1st-2nd grade because so many children got that help. Not being able to read in 3rd grade was a huge problem emotionally.

I suspect that being in special ed. isn’t a big deal in some schools . It probably depends on your community as a whole. My son is very proud of his school (the new special one) and we live in a town where many chlidren go there. He’ll happily explain the neuroscience of dyslexia to anyone who thinks it means he isn’t smart. : )

Waldorf and Montessori may or may not be good overall environments for your child, but neither are a teachiing method that explicitly teaches reading. We didn’t choose montessori originally b/c it usually requires the child to be very self-directed and even back in preschool we knew he needed more structure. He was in a progressive child centered school and that also proved to be too unstructured.

Let me share with you some of our thought process we went through.

At the time we realized we had a big problem, my son was half way thru 2nd grade. It was already too late to apply to other schools for 3rd grade. I don’t know what its like in your area, but here it takes a year to go through admissions. in addition to special schools we also looked at less rigorous, more structured regular schools. We decided that if we were going to put him through the stress of changing schools it wouldn’t be worth it if he still would need outside tutoring. His day would still be too long . We decided if he had to leave his friends it would be for an all inclusive environment that could meet his academic needs. Which meant not going to one of the special schools that served all types of LD children. We didn’t want to just stick him in a place that would be a permanent special ed. path with children who were much lower functioning than he is. We had the option (fortunately) of going to a school that specifically serves dyslexic children and whose mission is to mainstream them by high school.

These decisions are not easy, and often involve a series of trade offs. For us the negative was an hour long to commute to his new school and we ultimately decided to move closer to his school. The cost wasn’t a factor because we were already paying private school tuition , which when you added in the tutors and therapists, actually cost more than we currently spend. (FYI, you can sue your board of ed. for tuition for private placement, and/or deduct special ed. expenses from your taxes. There are ways to mitigate the cost.)

Whatever you end up doing about schools the one thing you must do now is make sure he is getting appropriate reading instruction so he doesn’t fall farther behind. I used alot of victoria’s suggestions (and others from this board) while we sorted ourselves out and everything helped a great deal.

Submitted by CACollins on Fri, 01/14/2005 - 7:41 PM

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I have been living with dyslexia since I was in elementary school and now I am getting ready to graduate with my Master’s in Education to become a school counselor.

My parents kept me in the main stream class room with the occational pull of for the resource teacher in elemantary school to the extra period in the special Ed class room where I would get help with my homework in high school. I also had a tutor after school and I would got to a special program during the summer so I would not have a gap in learning. Through out my schooling I always given the amenities that I need to succeed which helped a lot.

Your son will feel different then the other students and he will struggle, just keep telling him that he can do anything he puts his mind to. Always push him to do his best never settle on just ok work, it will benifit him in the long run.

Submitted by Sue on Mon, 01/17/2005 - 4:19 PM

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Yes, early is important — and one of the saddest mistakes is the assumption that a good school will provide effective instruction for a bright child who simply doesn’t quite fit the mold. “Good” schools are sometimes the *worst* for students like that, unfortunately. (Sometimes, the schools have earned their “good” status by focusing on maximizing test scores for that Magic Middle bunch, and basically ignoring the outliers — or, better yet, finding ways to have their scores excluded, which is sometimes as simple a matter as getting that Special Ed label on them, despite teh NCLB rules about that stuff.)
INvestigate the other school — not necessarily to go there, but for connections. I taught at one, and we knew who the good docs were (and which psych took the high schoolers on self-esteem building field trips where they could all share drugs behind her back :-( ) . And sometimes they know of a former employee who, say, had moved to your neck of teh woods and was looking for tutoring…

Submitted by marieprei on Mon, 01/17/2005 - 5:43 PM

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I just want to say how inspirational it is to hear stories like yours, CACollins. To know that there really are real life success stories is more helpful than you know. I know from spending the last 17 years of my life with my husband, who has Dyslexia, how hard daily activities can be. Just reading the daily paperwork for his business is a struggle for him, and yet he has enjoyed a measure of success. To know that you have gone through college is inspirational. I certainly hope that Tyler will choose to go on to college, and we are planning that direction financially, but I am also trying to prepare myself for the chance that he won’t want to. Thank you for sharing the success you had in the public school environment. It makes me feel better about the choices we are making. I don’t really feel like we will have any option but to go that route, but if we felt it wasn’t going to work for him, we would have to make some major life changes in order to afford a private, specialized school. My hope is that we will be able to stay on top of the school he is in already, and that he will thrive there, inspite of his Dyslexia.

Thanks again, everyone. This posting board is terrific! Marie

Submitted by Janis on Wed, 04/06/2005 - 5:54 PM

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I have a 13 year old daughter with dyslexia and dyscalculia she was diagnosed at the age of 8 with dyslexia and dyscalculia. We had her assessed privately as the school/health service in England was so slow and she was slipping in the abyss of bad work at school. The best thing you can do is try and find a private tutor who can help with maths and english - schools in England tend to hit on the English first and this is supposedly the best way to go. If you can read you can work out maths! Anyway we got her a private tutor (but sadly just before Xmas last year she died very suddenly - we now have another tutor who does maths) I have been into my daughters secondary school about this and her english seems to be okay at the moment. So here we are with maths help - where her memory does not help her at all - times tables etc……

She has an IEP but being in secondary school now you cant always get to see these. I have an 9 year old daughter as well with an IEP who has memory problems but no sign of dyslexia and dyscalculia. My husband became a school governor at both their schools because of the problems - it does sometimes help having a foot in the door to say ! Just keep in touch with his teachers and school nagging helps and I believe your local education authority (or whatever you call them where you live!) should have some sort of procedure. Every school in England should have special needs policies you can always ask to see them. Nag you doctor or child psychologist keep chasing people if you are always worried. If you get no luck with teacher go to head teacher then chair of school of governors…. and onwards and upwards perhaps writing to your senator or member of parliament. Good luck - you are the ones who must support him time goes by so quickly and he needs the help now not tomorrow.

Submitted by marieprei on Wed, 04/06/2005 - 6:56 PM

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Hi, Janis-

Thank you so much for your posting. It is always great to hear what other parents have come up with. My son has started with a tutor that specializes in Dyslexia (she has Dyslexia). So far, I am very pleased. She focuses not only on helping him learn strategies for decoding, but also spends time on the emotional/stigma side of the problem. I think it is good for my son to know that lots of people have these problems, and they are still very intelligent and successful.

We are strongly considering changing my son to a Charter School for next year. Do you have Charter Schools? Does anyone have feedback on LD kids in Charter Schools?

Anyway, thanks again, and I wish your kids the best of luck, as well. Sincerely, Marie-

Submitted by bgb on Wed, 04/06/2005 - 8:17 PM

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[quote=”marieprei”]
I think it is good for my son to know that lots of people have these problems, and they are still very intelligent and successful.
/[quote]

Is your son a member at http://www.sparktop.org/intro.html ? It’s a kids site for, as their slogan says, “all kinds of minds.”

My children loved it for a while and the board helped reinforce typing skills. They are teens now and a bit to old for the board but it was good for them to know other smart, LD children existed.

Barb
PS–It could get interesting to compare the English and US school systems.

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