MicheleB Posted September 13, 2008 Share Posted September 13, 2008 Or this unusual? (Brief synopsis: both my boys were dx with dyseidetic dyslexia and the n.p. said it was the most severe he's ever seen). No one seems to have any help or hope for us (beyond, "Well, hopefully they'll learn to read). I talked with our speech therapist today for 30 mins. She has so kindly been trying to put something together for us, but she's at a loss. Our n.p. suggested vision therapy and single-letter flashcards. That's all. No one I talk with seems to have any idea what we can do, and quite frankly, neither do I. What if we can't afford VT? Is all lost? Should I just Google 'dyseidetic dyslexia' and read like a fiend, trying to sift and sort and decide what works best? I feel at a standstill. I know our dx is fairly new, but I know last year I felt like I spent a lot of time beating our heads against a wall with schoolwork, what to do, what not to do. When my 9yo cries because it's too hard to write his last name two times (OK, we do have a long last name), I wonder if now is the time to push it. KWIM? Today, we "wrote" in flax seed; reviewed single-letter flashcards; and with my youngest I wrote a letter and he drew a picture with it, to help remind him of the letter. I don't really know how else to help them. I joined a Yahoo group.... How did you learn about your dc's dx? What helped you the most? When do you stop being afraid what you're doing is harming rather than helping? Etc, etc..... Quote Link to comment Share on other sites More sharing options...
Michelle T Posted September 13, 2008 Share Posted September 13, 2008 My son has different learning issues, although they are also severe. But I sure can relate to not knowing what to do, feeling sort of panicky and discouraged, not having money to try different therapies, and wondering if my son will ever manage to do the most basic academics. I spend tons of time looking up various websites, reading whatever I can find, and researching different learning programs that I think might help. Prayers going up for you. Michelle T Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted September 13, 2008 Share Posted September 13, 2008 I am not sure what the difference between different types of dyslexia is, but my sister has dyslexia. She was diagnosed at age 8 and the school system said that special ed was the only place that could help her but she would likely not learn to read well if at all. My parents took her to Sylvan learning center, and they were able to use blue tinted transparencies, a different approach to learning to read and other things (sorry I was 11 at the time and not paying attention to the details). She is now working on her masters degree, so perhaps a place like Sylvan could help. Did you get to talk to the doctor (not just the NP) or is there an expert in the field? A bit of digging online can usually bring you to a doc that can help. We have hunted down second opinions and traveled to get help for one of our kiddos and it was well worth the trouble. Good luck, docs should not give such a dismal outlook without conferring with other docs. Don't give up, most of the time more can be done than is apparent shortly after a diagnosis. Wendy - Mother to 3 munchkins Quote Link to comment Share on other sites More sharing options...
Guest Posted September 13, 2008 Share Posted September 13, 2008 Or this unusual? (Brief synopsis: both my boys were dx with dyseidetic dyslexia and the n.p. said it was the most severe he's ever seen). No one seems to have any help or hope for us (beyond, "Well, hopefully they'll learn to read). I talked with our speech therapist today for 30 mins. She has so kindly been trying to put something together for us, but she's at a loss. Our n.p. suggested vision therapy and single-letter flashcards. That's all. No one I talk with seems to have any idea what we can do, and quite frankly, neither do I. What if we can't afford VT? Is all lost? Should I just Google 'dyseidetic dyslexia' and read like a fiend, trying to sift and sort and decide what works best? I feel at a standstill. I know our dx is fairly new, but I know last year I felt like I spent a lot of time beating our heads against a wall with schoolwork, what to do, what not to do. When my 9yo cries because it's too hard to write his last name two times (OK, we do have a long last name), I wonder if now is the time to push it. KWIM? Today, we "wrote" in flax seed; reviewed single-letter flashcards; and with my youngest I wrote a letter and he drew a picture with it, to help remind him of the letter. I don't really know how else to help them. I joined a Yahoo group.... How did you learn about your dc's dx? What helped you the most? When do you stop being afraid what you're doing is harming rather than helping? Etc, etc..... Even though I am a "newbie" on these boards I am no newbie to having a child with special needs. I have dealt with dyslexia, autism, epilepsy, and every other umbrella disorder that comes with autism. I hope this is not taken wrong...but I would give anything to be in your place with your child...my oldest ds can barely talk or understand...he does not even know how to play. But I work with him daily...believing that there has to be more for his life...and every so often he will say or do things that leave me speechless...and then there is my other dd(8) that was dx with autism at 2 and did not talk till 5...today she talks, reads, we have a long way to go but she has made sooo much progress...so I know it is not hopeless.... I can't give you specific advice what to do...but my heart goes out to you:grouphug:. I know how it is to feel hopeless. Just remember to focus on all the strengths that your children have...I have found...stress on the child only makes things more difficult and the child shuts down. What if you just took a break from all the areas your boys are having a hard time with...and focus on learning being fun again...and then when you do re-introduce the areas they are having a hard time with do it as their level...and without stress...and stay there until they can move on. Trust me nothing is hopeless when you have faith and give it time. Don't push your children based on what everyone else says a person should be learning by... I personally know someone (mid-adult) very close to me that had dyslexia and believed he couldn't read. I just started reading and sounding things out for him in a non-threatening atmostphere....and a year later he is reading all the books he can get his hands on. All I am saying is there is always hope....sometimes people just need more time and help then others.... I am praying for you. Being a parent of a child with special needs is very hard.... Quote Link to comment Share on other sites More sharing options...
Quiver0f10 Posted September 13, 2008 Share Posted September 13, 2008 Did you get to talk to the doctor (not just the NP) or is there an expert in the field? A bit of digging online can usually bring you to a doc that can help. We have hunted down second opinions and traveled to get help for one of our kiddos and it was well worth the trouble. This is what I'd suggest. See if you can find a child psychologist who specializes in learning disorders or who has training in diagnosing learning disorders. He/she might be able to point you in the right direction. Your ST should be able to give you a recommendation or try calling the nearest large hospital or university and ask for a referral. :grouphug: Quote Link to comment Share on other sites More sharing options...
LizzyBee Posted September 13, 2008 Share Posted September 13, 2008 Michele, I don't know where you live, but the All Kinds of Minds clinic in Chapel Hill, NC (at UNC) has an excellent reputation. There is a yahoo group for homeschoolers with children who have dyslexia - http://groups.yahoo.com/group/HSDyslexicKids/?yguid=120561193 Maybe someone on that list could help. :grouphug: Quote Link to comment Share on other sites More sharing options...
siloam Posted September 13, 2008 Share Posted September 13, 2008 I wouldn't think so. I am a visual dyslexic, and was diagnosed through the Irlen Institute. Like Wendy's sister I read with colored filters, though mine are a combination of pink and blue. For true dyslexics I am skeptical of VT as a cure all. I mean the are times I can climb into the car and I will be 100% sure that the way we need to go is the OPPOSITE way that we really should go. I have flipped it in my mind. If I am alone I go the way I think and at some point I realize it is the wrong way and turn around. If my dh is with me, with 17 years of marriage behind us, he tells me to trust him and even through it goes against every sense I have, I do. And he always ends up being right. VT isn't going to help those sort of dyslexic issues. It isn't a cure all. Though I do think it can have benefits. My biggest fear is that it only helps while one is activity doing it, KWIM? Just like when you quit exercising you loose muscle tone. My fear is that as soon as we stop VT my dd will go back to where she was before, or maybe a little better off because she reads more and therefor the muscle is exercises more. Only time will tell... To be honest I am going to give Barton Reading a try next, not only for my kids but for my own enrichment. I can't quite tell you how I learned to read. I can remember being asked to stand up in front of the class to say my phonics and having that deer caught in the headlights feeling. Must have been phonetically. But when I started this hsing thing I couldn't sound out a word to save me. My kids are back to back in age, so I have been basically studying phonics for 5 years. Now I do a much better job of sounding words out, but my oldest still does it better/faster. :glare: Sigh... Anyway Barton is an O/G method of learning to read. It is not cheap, but if you work through you can sell it to buy the next and they seem to hold their value for resale. Though there are other O/G methods you can try that are cheaper. There is a yahoo group called Heart of Reading. It has a lot of people on it with struggling readers and quite a few certified teachers. I have found it a wealth of information. I think this is one of those times where you have no choice but to keep on trying.... Heather Quote Link to comment Share on other sites More sharing options...
apheartsong Posted October 8, 2008 Share Posted October 8, 2008 I use http://www.littlegiantsteps.com. There are many resources/testimonials/links on the website and I'm sure if you called them they could point you in the right direction and/or give you some suggestions. Here's a link to the International Christian Association of Neurodevelopmentalists http://www.icando.org/. Lots of testimonials and links here as well. Allison in TX Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted October 8, 2008 Share Posted October 8, 2008 I I personally know someone (mid-adult) very close to me that had dyslexia and believed he couldn't read. I just started reading and sounding things out for him in a non-threatening atmostphere....and a year later he is reading all the books he can get his hands on. All I am saying is there is always hope....sometimes people just need more time and help then others.... ... something similar happened to my brother, and my son. my son was told by a school teacher that he would never be able to read. he is reading 1000+ page books now with no problems ( now writing is another thing). he really started reading at age 12. don't give up hope.:001_smile: Quote Link to comment Share on other sites More sharing options...
Sahamamama Posted October 8, 2008 Share Posted October 8, 2008 This is a bit different from your sons' situation, but about 16 years ago, my cousin gave birth to a beautiful baby girl they named Rachel. At the time, Rachel's brain did not signal her body to expel carbon dioxide, especially when she was asleep. As a result, the doctors put this baby on ventilators & multiple monitors. They told my cousin and her husband that the baby would be severely mentally retarded and "vegetative" all her life. The doctors also told Rachel's devastated parents that they should sign the baby over to an institution, or pull the plugs and let her die. Well, they didn't let her die. Instead, they found a nursing home (yes, a nursing home) that had a little respiratory therapy wing. A dedicated and wonderful respiratory therapist worked with Rachel during her awake periods to train her brain to signal her body to breath properly. I don't know how that RT did it, but one day Rachel was strong enough to come home (on monitors). A few years went by, and Rachel grew into a toddler, a preschooler, a school girl -- by the time she was about 9 years old, she was off all her monitors and ventilators. Now, she only uses a CPAP (Continuous Positive Air Pressure) mask at night. (Lots of people with sleep apnea/snoring also use this nightly). Rachel is bright, happy, healthy. She is an honor roll student in public high school, she plays the piano, attends church, serves her family, and is a beautiful and sweet young lady. I'm telling you this to encourage you and to give you hope for your sons. Ask God to guide you and to lead you to the right people/resources for your sons. There is hope, Michele. Please be encouraged and strengthened in your resolve to find the best path for your precious boys. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted October 8, 2008 Share Posted October 8, 2008 I have no answers, but wanted to give you a :grouphug:. I hope you're able to find answers and peace quickly. Quote Link to comment Share on other sites More sharing options...
MicheleB Posted October 8, 2008 Author Share Posted October 8, 2008 Thank you all. I'm touched by the hugs and encouragement. I know God has a special plan for my boys' lives. In fact, 9yo ds was crying last night about some of his struggles and I was able to remind him that God does indeed know Him, love Him and have a plan for him. He asked me "How will I know what that plan is?" :001_smile: Just really touched my mother-heart. This has been a rougher week emotionally for me, and we have had to definitely say "No" to the vision therapy, for financial reasons, at this time. But I feel at peace about it and feel strongly led to use Dianne Craft's Brain Integration Therapy Manual. I've heard a lot of good things here on this board, on another board and IRL about this, so I'm hopeful. :) Quote Link to comment Share on other sites More sharing options...
SkateLeft Posted October 8, 2008 Share Posted October 8, 2008 I don't have any words of advice for you, but I did want to share a quick story that might be encouraging. My brother struggled for years with what was eventually diagnosed (when he was 10) with dyseidetic dyslexia (they called it "visual dyslexia" at the time.) He couldn't write our last name properly for years, never learned cursive, and was always in the remedial reading group with the severely mentally disabled kids. He was left back in third grade. My parents were told at one point that "he might construct bridges, but he'll never design them." They were told he wasn't college material, and had guidance counselors tell him he couldn't hack a four year college, so just "Go to community college and choose a trade." (They put him in private school in his junior year, because of this stuff.) He worked his rear off. High school sports were a huge thing for him, and he credits a lot of his current success to learning to work hard physically. In June, he completed his oral surgery residency and is now an oral-maxillofacial surgeon (that's a DDS/MD!). :D Despite the fact that his handwriting is comparable to that of my 7yo, and that he's still a slow reader compared to most adults, he's a really smart guy who managed to finish university, dental school, medical school and a surgery residency. He's also a marathoner and triathlete who's training for his first Ironman. I don't know of anyone who had to work as hard as he did to overcome their learning disability given how severe it was (and still is), and I think it's pretty darn amazing. My mom just about cried the day that his high school alumni magazine ran an article on him and what he'd achieved. Anyway, you never know what's down the road. The stuff that these kids have to overcome can make them incredibly strong people. :) Quote Link to comment Share on other sites More sharing options...
Sahamamama Posted October 9, 2008 Share Posted October 9, 2008 I don't have any words of advice for you, but I did want to share a quick story that might be encouraging. My brother struggled for years with what was eventually diagnosed (when he was 10) with dyseidetic dyslexia (they called it "visual dyslexia" at the time.) He couldn't write our last name properly for years, never learned cursive, and was always in the remedial reading group with the severely mentally disabled kids. He was left back in third grade. My parents were told at one point that "he might construct bridges, but he'll never design them." They were told he wasn't college material, and had guidance counselors tell him he couldn't hack a four year college, so just "Go to community college and choose a trade." (They put him in private school in his junior year, because of this stuff.) He worked his rear off. High school sports were a huge thing for him, and he credits a lot of his current success to learning to work hard physically. In June, he completed his oral surgery residency and is now an oral-maxillofacial surgeon (that's a DDS/MD!). :D Despite the fact that his handwriting is comparable to that of my 7yo, and that he's still a slow reader compared to most adults, he's a really smart guy who managed to finish university, dental school, medical school and a surgery residency. He's also a marathoner and triathlete who's training for his first Ironman. I don't know of anyone who had to work as hard as he did to overcome their learning disability given how severe it was (and still is), and I think it's pretty darn amazing. My mom just about cried the day that his high school alumni magazine ran an article on him and what he'd achieved. Anyway, you never know what's down the road. The stuff that these kids have to overcome can make them incredibly strong people. :) Sharon, I am speechless. Amazing. My husband and I are bawling. Please hug your brother for me. Thank you for sharing this with us. Quote Link to comment Share on other sites More sharing options...
MicheleB Posted October 9, 2008 Author Share Posted October 9, 2008 Wow, Sharon! That is just flabbergasting *and* inspiring. Thanks so much for sharing that. Last night, when ds was sad about his struggles in life, he said, "I know I'll never read and spell and stuff good... that's just not my thing." It will be nice to have a story like this to tell him. :001_smile: Quote Link to comment Share on other sites More sharing options...
ELaurie Posted October 9, 2008 Share Posted October 9, 2008 My heart goes out to you, as I remember where I was in my search for answers to help ds 9 just a few short years ago. We worked with a neurodevelopmentalist through ICAN for a year, and used Diane Craft's BIT program for several months after that. However, in ds 9's case, HANDLE , recommended by Claire on this board :001_smile: proved most effective. Here is a link for ds 9's HANDLE provider; you will find an overwhelming amount of information on his site, but it will provide you with a very solid place to begin. There is also an eye doctor in the Chicago suburbs who worked with a friend of mine to provide a computer based VT program that she was able to implement for her dd under his supervision at home, which saved her a great deal of money. Perhaps there is someone providing a similar service in your area. :grouphug: Quote Link to comment Share on other sites More sharing options...
Rod Everson Posted October 9, 2008 Share Posted October 9, 2008 my son was told by a school teacher that he would never be able to read. he is reading 1000+ page books now with no problems ( now writing is another thing). he really started reading at age 12. don't give up hope.:001_smile: Hi, This thread has a few comments like yours, in which an older child who struggled initially with reading then just finally took off. What I want to point out is that this is consistent with vision problems underlying the reading problem. The brain is always trying to resolve issues of confusion, including the confusion caused by poor binocular vision skills. It initially does this by a mechanism referred to as alternating suppression (in which input from first one eye and then the other is ignored) and if that mechanism is successful a child will have developed binocularity and will finally be comfortable viewing print. However, when this fails, there is another avenue. The brain simply ignores input from one eye consistently when reading. At this point a child starts reading with just one eye (without even realizing it, and yes, the eye being ignored has normal vision) and it then becomes less of an effort to learn to read. I'm reasonably certain that a fair percentage of adults who struggled with reading as children, but who now read (I see a lot of parents like this in my reading practice, incidentally, ones who now read but struggled in school) are actually reading with only one eye. The other one's input is just ignored by the brain. Hard to believe, but true and easy to demonstrate with red/green glasses. Anyway, some of my favorite clients are kids who are in junior high or early high school who are finally able to deal with print, but no one has bothered to explain phonics to them since their vision stabilized. They often learn very quickly because, on average, they're as smart as their peers. I think one hopeful point people can draw from this is that things could look better in a few years. The challenge is to keep providing learning experiences (not in how to read, but in science, history, math, life, etc.) during the period that reading is a struggle. One needs to consider whether much valuable instructional time is being wasted trying to teach them reading when they are incapable of dealing with print until either their vision needs are met or their vision stabilizes as I described above. (The link below will take you to the alternating suppression discussion on my website for more details.) Rod Everson OnTrack Reading-Alternating Suppression Page Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted October 10, 2008 Share Posted October 10, 2008 Hi, This thread has a few comments like yours, in which an older child who struggled initially with reading then just finally took off. What I want to point out is that this is consistent with vision problems underlying the reading problem. The brain is always trying to resolve issues of confusion, including the confusion caused by poor binocular vision skills. It initially does this by a mechanism referred to as alternating suppression (in which input from first one eye and then the other is ignored) and if that mechanism is successful a child will have developed binocularity and will finally be comfortable viewing print. However, when this fails, there is another avenue. The brain simply ignores input from one eye consistently when reading. At this point a child starts reading with just one eye (without even realizing it, and yes, the eye being ignored has normal vision) and it then becomes less of an effort to learn to read. I'm reasonably certain that a fair percentage of adults who struggled with reading as children, but who now read (I see a lot of parents like this in my reading practice, incidentally, ones who now read but struggled in school) are actually reading with only one eye. The other one's input is just ignored by the brain. Hard to believe, but true and easy to demonstrate with red/green glasses. Anyway, some of my favorite clients are kids who are in junior high or early high school who are finally able to deal with print, but no one has bothered to explain phonics to them since their vision stabilized. They often learn very quickly because, on average, they're as smart as their peers. I think one hopeful point people can draw from this is that things could look better in a few years. The challenge is to keep providing learning experiences (not in how to read, but in science, history, math, life, etc.) during the period that reading is a struggle. One needs to consider whether much valuable instructional time is being wasted trying to teach them reading when they are incapable of dealing with print until either their vision needs are met or their vision stabilizes as I described above. (The link below will take you to the alternating suppression discussion on my website for more details.) Rod Everson OnTrack Reading-Alternating Suppression Page thankyou. this describes my 2 sons with dyslexia to a 'T' not sure that I will be able to get any treatment for them though Quote Link to comment Share on other sites More sharing options...
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