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Everything posted by SonshineMama

  1. Yes! As a part of his oncology his hearing and vision are screened regularly as after affects of chemo can include vision and hearing impairments. so far, his hearing and vision have been mormal. He's 9 year post diagnosis (cancer) and 6 years post chemo. Typically impairments happen in the first 5 years post chemo so we are hopeful he's past that. He's now considered a long term cancer survivor <3 and yes yes we use dragon but with his right side affected by chemo spell better works better for him. I do scribe some but with spell better we are workig at getting him independent of me. Thank you for the encouragement. I'm praying about what to do next :-)
  2. Thank you all for your input. Keep it coming if you have more. I'm so grateful for this board. :-)
  3. We have had evaluations w a SLP, OT, neurology, and neuropsych. His issues are complex and the COVD (is that the right anacronym? The developmental ophthalmologist) says he's not a candidate for vision therapy. he has acquired dyslexia (a neurological incident similar to a stroke has resulted in both phonological and visual dyslexia). His working memory was destroyed and he is at a 3% in that area. He has visual processing and perception disorders. He actually retained executive function which is abnormal. The neuropsych has his theories on that; I'm just grateful. here is my opinion of what is happening *LiPS worked O-G worked for reading only and he can visually discriminate and perceive up to 2-3 syllable words *rewards worked to some extent but he needs another round of this or something more *reading assistant is working but may not be enough in regards to decoding long syllable words i believe his reading just needs time and effort. We did spelling alongside of reading but it wasn't sticking :( spelling, however, appears to be working memory issue! I actually plan on discussing this at neuropsych. Because he has long term affects of chemo and may have long term effects from a severe concussion, neuropsych is an ongoing process for him. I'm also going to discuss if a tutor at this point is wise! The problem we are having is that the chemo saved his life but people are unsure what to do with him now... Haha... Typing brought some clarity. I'm wondering if I need to back up and focus on working memory again?? I am starting him a new supplement this week. A brain supplement actually amino acid based. He's also done a ton of brain integration therapy, brain gym, vision gym, and some vision therapy. I am going to look into spelling U See! That sounds like it may be a good fit!
  4. I'm confused (which happens often when I look at all the options for our son)! Im open to trying another program with him or putting him back with a tutor. However, he's done LiPS (w/a SLP) and an O-G program. How does Barton and Wilson differ from O-G and do they have a spelling specific program that I'm not finding? While he is still needing some reading remediation, his spelling falls farther and farther behind his reading. Everything we do helps his reading while doing nothing for his spelling skills. A quick google didn't offer spelling options that would fit. Barton is reading and spelling Wilson Just Words is accelerated Can you clarify? Are you suggesting I start over again w one of these (Barton, Wilson or an O-G tutor) -- do the reading/spelling program but focus on spelling? Or is there a spelling program I just haven't dug deep enough to find. As I consider that as an option, it may be worthwhile to start over again or just put him back in therapy. Truth be told I'm fatiguing doing so much at home. Sorry to be confused! I'm definitely wanting options; however having done so many things w him at home and gone through so many types of therapy I'm losing hope a little :( and he's so frustrated. The biggest relief was when he finished rewards and started reading assistant because he didn't have to work w someone anymore for reading!!! Thanks so much.
  5. We have not done anything else exc the spelling that went along w all the reading programs! Recipe for reading, rewards, LiPS and picture me reading were his reading spines. We also used Dianne Craft phonics. We followed the spelling recommendations and as soon as he wasn't reading along with the program the spelling was forgotten. I'd love to hear about a program that breaks it down further. I was only aware of rule based and pattern based spelling programs. He cannot recall information long term from either so far. (I have attempted to use AAS to do patterns. )
  6. My ds is still struggling with spelling in spite of making huge strides in his reading. We are stuck in AAS 2 because he cannot recall the way to spell a long vowel He may spell bake one of 3 ways on any given day: bake, baek, baik I will say he has A HUGE working memory deficit. I was having him read over and over the long vowel lists and both of us are extremely frustrated. Months of working on the silent e words are not getting him anywhere. I recently came across an app that would accommodate for this (Spell Better) and I'm considering dropping spelling and letting it slide. I feel almost that the way the app is would help him develop rudimentary spelling skills over time - it's kinesthetic and has him choose a spelling (word prediction). I'm beginning to think it's like working memory in regards to his math - the neuropsych encouraged us to hand him a calculator. It took almost 4 years to be willing to do it and now he's almost on grade level in math. He still has some bumps but for the most part, he's FINaALLY progressing well in math. I'd love to hear some thoughts on this!!
  7. Thank you so much. I really appreciate the solid explanation. I am seriously considering this as a remedial "bridge" of sorts for my son. It's patterns that are a struggle for him but this seems super thorough and I would imagine would cover any issues that I have not recognized. We are theater people who do many things with Brittish accents and phrasing. Recently, my daughter said to me what is "in lieu of? I thought a lieu was a toilet in Brattain. SO hopefully we can figure that out ;)
  8. Several questions - when you say "don't skip the hands on activites" are you referring to the introductory activities the parent does before the child going online to do the activity . 3 steps if I'm understanding correctly 1. parent teaches concept 2. online activity (student independent) 3. worksheet. Also, what is A-4 Paper??
  9. If you are still looking, I will be done with the teachers manual by next week. My ds is very close to done and it's been a great match for him :) I am moving onto Reading Assistant for him next :)
  10. I do not have a FASD child but I have a son who is a cancer survivor. He looks totally normal but is horribly damaged. Life will always be a struggle for him. The grief still comes in waves. People think "8 years post diagnosis" that is awesome but every time a new struggle rears its head and he falls farther behind his peers, I grieve :( We continue therapy in hopes he will be able to go to college and live normally but it's just not known. And I secretly fear he will never be ready for high school level work . . . I too know God has already made beauty from our pain. WE'VE seen beauty from the pain. Bbut it's still hard. . . a book that has been particularly helpful for me in this area is Randy Alcorn's deadline - totally not on this topic (it's all about eternity) but has a beautiful picture of down's syndrome children in heaven. My son has an empathy and sweetness about him that is "special" the way downs syndrome kids are. I have tried so hard to live for TOMORROW - as in heaven. Knowing God made him for something special is just a huge help. Yesterday, I was having a PTSD flashback to his concussion and flight for life experience (huge fall from tree that may be contributing to his issues along with the cancer - another unknown we will never have answers for). I have long felt that God created ds for something really special but for the first time I felt like the Lord was telling me that the 4 times he almost died were Satan's doing and that God protected him from death . I remind myself that God doesn't need special abilities or intellect that he needs people willing to be molded and changed by him. Sometimes the weaker the vessel, the stronger God's power. That (above) is of course a good day, bad days I still sit and just weep for the pain. Every . . . single. . . academic subject is a huge struggle for him. I worry constantly that I'm not doing what is best for him (keeping academics short and sweet during the day) but then I remember his brain can only absorb so much at a time. When I think of what people will think, I try to stand tall and remind myself that it's what is INSIDE that matters. BUT there are days I just want a hole to crawl in and I want to scream "why him? why us?" I will be praying for you
  11. Yes, I know I'm not doing vision therapy - just described what I do with the OT as someone asked. BUT something that you just said made me remember what the person who worked for the COVD said specifically. Our son has a medical damage to his vision and doesn't appear to have a "developmental vision" issue. Reversing damage is different than rehabilitating "stroke like" damage to a child. I may or may not consult further but your post prompted recall of why they didn't think they could help him. It is food for thought on where to go from here - because his progress this year has been significant, I"m unsure that any new therapy is necessary. I will admit that I cringed at the "couple of months" idea. EVERY single therapist he's needed has told us a couple of months and it's taken years to fix the other problems that have come from this issue - core, gait, trunk, shoulder, arm, speech. We are still in speech and OT and he still has a PT schedule for at home although we are moving to weight lifting and swimming for maintenance. Thank you all for listening to me process/figure this out ;)
  12. Our son is a cancer survivor. As of April, he's been on chemo or in therapy for 8 years. It's HARD. Really hard. Some years, we've gotten very little done due to 2+ appointments per week and other years we've gotten a ton done due to a really good schedule. When our son had that much therapy, we cut back on school A LOT. I'd rather not stress out both of us. Stress slows down my son's progress. We don't try to get much done at all on therapy days except fun things and games. We take off therapy days from formal schoolwork. Honestly, we found that the weeks we take off therapy days, he gets MORE done if you total the week. Therapy days he's totally useless from fatigue. This means that he's averaged 2 to 3 days of school a week for years now. That is why he has to play catch up now that he's down to once a week therapy. One thing I've decided-- if he's 19 or 20 before he's done with high school, it's okay. They didn't expect our son to live at one point. If he's graduating high school at an age older than normal, who will care when he's 40? So, having said that, we have decided he's probably taking 3 years for 7th/8th grade so that he can do high school in only 4 years. For cooking, cleaning, etc, get your hubby and child(ren) involved. All our children can cook dinner, flip laundry, clean the kitchen, etc. I cook dinner an average of 3x's a week.
  13. Oh and about revisiting the dev optometrist - not against it but don't have the cash for it at the moment so if OT exercises and brain gym are bringing improvement that is our best bet!!!
  14. I suspect he hit a plateau and not a wall because about a week ago he started improving again. He can make it through 45 minutes before complaining about fatigue if he is doing "easy reading" and 30 minutes IF a lesson includes really difficult decoding. I have definitely found that at times he stops improving for a short time before improving again - like an upward progression ceases and then holds for awhile before increasing, ya know? Exercises he does: Vision gym: *lots of figure 8 work - following thumb, closed eyes following finger tracing eyes on face like mask, following pencil in 8 *pencil work in addition to figure 8 - following pencil back and forth, up and down and in x while pressing on bone beneath eye and holding head stationary Plus several brain gym exercises for midline work as well as memory exercises and front to back brain waves One really important thing I also noticed is that his right eye has stopped "jumping" when he reads (if I sit across from him, every now and then I would notice his right eye jumping. I haven't seen that anymore. At this point, I am going to wait and see.
  15. I wonder if I got a bad office person because people drive from all over the state and I am in the largest city in my state :( Many people we know have gone there but the person who answered the phone basically listened and said "I don't think we can do anything for your son. I've never heard of such a thing." (neurological stroke like damage from chemo probably a medical reaction). In the person's defense, the entire generation of "emerging" cancer survivors have a lot of therapists/medical professionals scratching their heads in confusion. They save these children with chemo and then have no clue what to do with them afterwards when they are damaged from the crazy toxic drugs. It's only been the past 15 years that the survival rates are increasing but with the survivors comes a slew of after affects. *sigh*
  16. The dev optometrist I spoke with has NO experience with the condition our son has. The OT was treating other things and willing to "give it a try" to help with some VT that she had learned (she worked for a dev. optometrist. I could call again but last time I called for an eval they said "hmmm. . . I"m not sure about that" and didn't really even suggest a consult! Our son has a weak right eye due to neurological damage (stroke like incident). The problem is that they don't know if it's "rehabilitative" or "permanent" and to the tune of thousands of $$, they don't seem interested in us and that doesn't make me want to "chase them down" Does that make sense?? SO I am really just looking for "eye fatigue" exercises as all the other symptoms have disappeared except eye rubbing and not being able to read for long periods of time. However, he's gone from being able to read 5 minutes to being able to read 25 minutes if it's at his fluency level. BUT we have hit a wall after all that improvement. Plus, when the decoding is difficult, he RUBS his eyes a lot! So far we do palming and some "vision gym." He's improved A LOT over the past 3 months but I just wondered if this book was good since it appears he is stuck. On the other hand, I wonder if he just needs time to pass this plateau?? What I'm reading in this thread is that it would be a good second step if we found a dev. optometrist to help us.
  17. That was my first thought - I wonder if he needs to back up and use LiPS or another program focused on sounds retention. My son was working on SO many things and we need to back up and work on just auditory discrmination.
  18. Our son has been doing some vision therapy with an OT; however, his eye fatigue isn't improving at all. I was looking at this book http://www.amazon.com/Developing-Ocular-Visual-Perceptual-Skills/dp/1556425953/ref=cm_cr_pr_pb_t Or does anyone have suggestions for helping eye fatigue??
  19. Math fact memorization is the issue. His working memory is very impaired. He still doesn't know single digit addition facts by heart (we've tried several ways of memorizing facts). He uses a finger abacus to add and subtract, and uses multiple songs to calculate division and multiplication. It is doable for long addition, subtraction and multiplication - he hit a wall with long division. Yes, he can "handle" long multiplication; however, it is VERY time consuming due to the memory and processing issues. It's like walking through mud 8 inches deep -- horribly difficult. Conceptually h e is GREAT. No lining up issues, no conceptual issues. Even gets the "processes" for double digit division but the computation is a major problem.
  20. Thank you. Our neuropsych and OT said the same thing although they were supportive of me trying "other ideas" (like the finger abacus and multiplication songs). I needed to hear that other people's "professionals" (for lack of better term) are advising them of the same thing because I was REALLY feeling like a failure *blush*. It's been a few years of trying to avoid going to the calculator. . . I'm wanting to allow it but it feels like "giving up". Because of that, it's REALLY good to hear that others are doing this as well :) I fear that he will have to take a math test without a calculator if he wants to go to tech school or get an apprenticeship??? I know SAT/ACT allow calculators so ironically he'd be fine for college .
  21. We used several programs for our struggling son. None you have mentioned (although we use the AAR readers along with AAS which my son loves). For reading we used *picture me reading (to help with sight words) *Recipe for reading (O-G based) *LiPS We had to stop EVERYTHING and back up for LiPS because it turns out that the way our son was processing sounds was holding back his reading. Once he really "got it" we moved back to recipe for reading. It has taken us a few years to get through the above. With those things, he has gotten to the point of being ready for Rewards which is what he will be doing next. I would guess he's at about a 4th grade decoding level; however, reading is still very cumbersome for him so we are working REALLY hard on speed and fluency before starting Rewards!
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