Amethyst Piano
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Posts posted by Amethyst Piano
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Yes, I do have plenty to do while I wait! And I didn't need anything else added to my plate. :) but seriously, I am thankful that we are finally in a position to be able to get all of this checked out this year. Really, really thankful.Just to ditto Crimson, I did take my ds to get his hearing checked right before his np eval. You really never know what will show up. I'm taking dd soon too, have the appt scheduled.
Sounds like you have something you can do in the meantime while you're looking for a psych. If she was having success with AAR pre, you might as well continue forward. It's a solid program, and if she can do the phonological tasks without frustration it's an excellent sign. Since you have it and she was having success using it, you might as well continue.
What happens if you drive further for an eval? Have you tried the Learning Ally referral lists to see if they pop up anything? Or your state dyslexia association to see how might be on the board or a popular speaker at their functions? Remember it's ok to make an eval and realize as you get up to it you don't need it. You'd much rather do that than not to make the appt and want it. :(
I am planning to continue with the AAR for her. I like the program. I used the first few AAS levels for the older kids and really liked it, too...other than the time it took to do with 4 kids.
I'm already driving "further" bypassing our "local" children's hospital for the bigger city hospital. The first evals I got for the older kids were at the children's hosp about 35 minutes away and were practically useless. With the ones I just had (where NP said older DD didn't have dyslexia but get tutored for it anyway and then the Scottish Rite accepted her for tutoring) were at big city hospital about 1.5 hours away (more in traffic). I think I'll just go to the same NP that just saw my oldest DS and older DD. I'm hesitating a bit though. I could see someone else there, but maybe that would be awkward?
ETA: I did check Learning Ally lists and a little on the state dyslexia organizations. No real help from either.
Since insurance is paying, I'm definitely sticking to their list anyway! At least to start....
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Has she had a recent full audiology exam? If not, I would strongly encourage you to get one just to make sure her hearing is normal. Especially with your deductible already being met for the year.
That is in the works. I have an appointment with her ped to get the speech and hearing referrals. That's what I did for the older children, too. The sheer number of appointments I have coming up is staggering!
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Hugs to you! I hope you get some time to regroup.
I hide in the closet/bathroom. We have a walk-in closet off our bathroom, so I can even lock myself in. I even have a little storage ottoman in there that I can sit on. (And sometimes I hide little treats for me in there, too. :) )
I desperately want a chef, too. Since our adventures into the world of food allergies, a huge part of my time has been spent either shopping for those special ingredients or doing the food prep itself. I never liked cooking to begin with, so this is quite difficult for me.
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She is still toward the beginning. Capital K. I don't really know how she is doing, because the person I hired is doing it with her. The teen just had oral surgery, so I can't really bug her about it right now either. I did the first few lessons with Dd back in the fall, and she could barely rhyme back then. Now she is doing much better with that, at least. Just now, I "quizzed" her on some words and she was able to do better with the rhyming.How far is she in AAR pre? Is she hitting walls? Struggling to do tasks?
I think I probably need to take back over the AAR part with her so I know what's going on! And thanks for the EZ Write mention. I am going to take a look at it....I'm so tired of HWT, plus I have bad associations with it since that's what I used with my dysgraphic kids. So *this* is the kind of handwriting the program produces!:) Silly, I know. Lol
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Even our ps is willing to acknowledge the SLD because ds has had many interventions that SHOULD have done it in a NT child. If you call your psych, they'll have an opinion. I *think* they said they usually don't want to diagnose a child with dyslexia until they're half-way through K5, meaning they've had that instruction that should have worked. But in the case of my ds, he could not identify initial or final consonants, medial vowels, ANYTHING before LIPS. That was even though we had done many other programs, so doing the therapy program (LIPS), which finally got him able to hear those, clearly altered his score. If he had NOT tested as dyslexic as a result (like just above the disability range, not even by discrepancy), I would have been very, very frustrated. As is, it worked out for us. I'm just acknowledging there could be situations where it wouldn't. But yes, some of the psychs want them to have had instruction so it's clear it's not merely an instruction deficit. The ps has their RTI (Response to Intervention) process, and because I could demonstrate what I had done as a homeschooler was similar to what they would have done with RTI, they were more willing to acknowledge it as a disability.
If the dc is almost 6, that's typical K5 age. Are you saying you've been doing NOTHING?? You've done no phonemic awareness, letter awareness, print awareness, sight words for basic things around the house (exit, on, tv, etc.)?? No alphabet puzzles, beginning writing, cvc puzzles, Leap Frog Letter Factory, NOTHING??
You could have a middle ground here, if the psych wants to see intervention/instruction before diagnosing. You could get OPGTR or Phonics Pathways from the library and try it on her to see what happens. It won't be enough to affect CTOPP scores if she's dyslexic, but it's something to demonstrate attempts at reading instruction and enough to get a non-disabled student reading at that age. Or AAR pre- is adorable and in the realm of good programs you use with NT children. If she can actually do it, that would be a fabulous sign. My dyslexic enjoyed the alphabet worksheets but quickly got to where he couldn't handle the phonemic awareness tasks and couldn't move forward. You don't have to do a *therapy* program to demonstrate adequate instruction.
Working memory deficits are not getting you a reading disorder label.
Thanks for this post. I've been thinking on psychs wanting to see instruction part. I didn't get a chance to call them today, but I hope to call tomorrow and will definitely ask about this. I probably wouldn't have thought of this on my own, so thank you for bringing it up!
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Starting LiPS is what has convinced me that ds needs a real evaluation, not just the "yeah, he's dyslexic--get an official eval. at some point" we got from a consultation with an educational psychologist. The sound tracking exercises have been torture for ds--he doesn't have the working memory to remember three consonant sounds long enough to find the correct mouth pictures. We're still looking for an evaluator--psychologists in our area seem to either take month-long vacations and be unavailable, or just never call back after repeated attempts to call for information.
I had a really hard time getting an appt for evals the first time. I'd call and leave messages, but no one would call back or they just weren't scheduling or they said they'd call when they got a spot in the wait list?? or..plenty of other excuses. It was so hard when I'd finally gotten up the courage to call and then just to be blown off. I feel for you. I hope you find someone good soon!
On the Barton screening, she missed about three that seemed due to working memory. The rest seemed more like she just didn't hear the slight differences in the sounds.
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Whether to wait or not seems like such a YMMV thing. All of our kids have their own unique set of challenges.
I have personally not chosen to wait for the NP eval in order to get started on LiPS. I'm reading through the manual now and as soon as my DD gets her hearing aids, we're going to start. I actually think in her case, straightening out the consonant pairs via LiPS will probably make the NP results MORE accurate. The whole goal of the NP eval is to tease apart the impact of the hearing impairment from any underlying LD's. The more that I can do to remediate the physical disability, the more confident everyone can be that any remaining symptoms are a brain issue.
I can definitely see why you start LiPS first. That makes tons of sense in your situation. Thanks for sharing--that helps me sort out my situation better.
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If the dc is almost 6, that's typical K5 age. Are you saying you've been doing NOTHING?? You've done no phonemic awareness, letter awareness, print awareness, sight words for basic things around the house (exit, on, tv, etc.)?? No alphabet puzzles, beginning writing, cvc puzzles, Leap Frog Letter Factory, NOTHING??
Goodness no. Didn't mean to imply that at all.
She's done the first 3 workbooks in the Ready, Set, Go for the Code series, she's gone through all four books in the Developing the Early Learner series, she's done EarlyBird K Singapore math workbooks, she's currently doing pre-AAR, she's done plenty of alphabet puzzles, stringing alphabet letters together, she has an alphabet rug with pictures in her room that she plays with a lot, she knew her letter sounds at 3 (but no blending), she's completed 2 HWT workbooks, plus the HWT app, she's done quite a few iPad apps with letters/sounds/easy words, plus a bunch of random stuff I've had lying around left over from the others and someone from the family reads to her every day. She can definitely pick out quite a few words, but I think they are just sight words. She "reads" the items on my to-do list, but she's just very good at guessing since she knows what things I usually need to do.
But…I've actually hired a teen (with an early childhood education interest/background) to come and help me, and she is the one who has ended up doing most of this seat work with my DD, just due to my lack of time. I guess that's why I was so surprised to see just how badly she did on the Barton pretest. Obviously, I need to spend more time with her myself for a better feel for where we are. Sigh. (feeling bad for not being more on top of this…I need to learn to how to manufacture time and energy)
Got to go now, back later.
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I asked the same thing, whether I caused it. He looked at me funny and asked if I had dropped him on his head? ;)
It's genes. It's just genes. You aren't changing your genes with your salad, no matter how much you eat, not to that degree. And the world is a better place for the enriching experience of diversity.
Yes, it's going to be a lot easier to get the dyslexia diagnosed if you go in before you do unusual and therapeutic level interventions. How close is the dc to 6?
Yes, those pesky genes. But what about the expression of those genes?? Maybe I did that! Lol
She'll be 6 in 5 weeks. Not so far away.
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That would take some imagination to think this is not what it looks like it is, given your family history. Odds are she'll still test as dyslexic, no matter how hard you work. I would call your psych (someone who diagnoses dyslexia), ask them, and do what they say.
Seriously.
I fumed because my ds didn't seem very dyslexic to the first psych when I had done so much LIPS, ostensibly getting him close to age-appropriate (but still low enough to get a label). Got him into the ps psych a few months later, doing Barton 3, and the dyslexia/reading disorder was again VERY obvious, showing up in reading comprehension. So I say no matter what it's going to be there if the psych really looks. But just do what the psych says. Sure, in an ideal world you'd get that CTOPP or whatever he's going to run done first, sure. If not, it will still be obvious in reading comprehension issues, etc.
Yes, fuming is what I did in the past when doc 3 years ago wouldn't say dyslexia because the older kids were reading "at grade level". But years of work (in their case) is different than a few months of work, for sure. I guess the question is if the psych really looks, as you say. I'm a little concerned about the current one, too, since she wouldn't say dd has dyslexia even though phonological skills are weak and she recommended tutoring for dyslexia anyway. Sigh. But we've been over that already! Lol
Thanks for the nudge in the right direction, everyone. I guess deep down I knew what I needed to do, but...this is my baby. And I tried so hard to do everything right this time, I ate much more carefully during pregnancy, I fixed so much I thought I did "wrong" with the olders, etc. I was convinced she was going to be like my one who has no learning challenges just because I did everything "right". I know that's not really how it works, but...somehow this...just hurts or something inside.
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Yeah, I think you are all right, especially now that I had her do the Barton screening and saw how much she struggled.
So I need to do LiPS with her. No problem, already have it, used it with all the other kids.
But. Should I wait until after a NP eval? It took about 4-5 months to get the other kids in, so I'd probably be looking at a loss of 5 months or so vs. starting her right away. I made the mistake of trying to fix before evals previously. I don't want to do that again. Thoughts?
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That is what I personally would do, bearing in mind that some tests may need to be repeated in a few years. But even if you do need to have say, CAPD testing in 2-3 years, at least you'd have a lot of the expense out-of-the-way while you've hit your deductible.
Thanks. This is what I'm leaning toward though I don't feel like I have concrete reason right now.
However, I did just give her the Barton screening test (for those familiar with it) and she failed spectacularly. She only got 4/15 correct on Part C, the 3 sounds section, 3/15 correct after repeat, and 8/15 just plain wrong even after 2nd try. Sigh.
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So I have one child with ADHD and severe dysgraphia, one child with severe dyslexia plus more, one child with ADHD, anxiety, and aspects of both dysgraphia and dyslexia (but not getting full diagnosis on either), plus one child to whom all things come extraordinarily easily.
Then the youngest, now almost 6. Unfortunately, this one's early history is following the path of the ones with the diagnoses. Same speech difficulties/delays, often mistaking words for similar words, not hearing sounds within words, and poor rhyming, though improved since we've been working on it for a year. Little things like her frustration level and intensity level are so much like the older siblings that have diagnoses. I haven't tried to teach her to read yet because...well, lots of reasons, but I guess deep down I'm afraid of what will happen when I do. :(
So after two NP evals for the other kids this year plus some other big medical expenses, we will meet our deductible. (Yes, our insurance is covering NP.) I'm wondering if I should try to get her evaluated now at 6 since it will be fully covered this year?
Has anyone been in a similar position? I know I wouldn't go if she were my first...but given the family history? (I do know she needs speech and hearing evals at a minimum which I'll do regardless.) I regret not going earlier with the others, but is this too early? I wish I hadn't begun remediation without a diagnosis with the others, but I don't want to teach her with "inferior" materials just to preserve ability to get a diagnosis! (If that makes sense.) Any thoughts?
ETA: just did Barton screening. Huge fail. Should I do LiPS before NP eval or wait until after so as to not confuse things? (More info further down in posts)
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Davidson gifted forums has a test score area with a couple of testers that help interpret results. I've seen all sorts of scores reported there that people help with, not just gifted.
Thank you! I will check them out.
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If you would like a professional to help you navigate the implications of the testing you've received, one type of professional that can help is an educational therapist. An ET who is a member of the Association of Educational Therapists has training in helping parents understand test results as well as prioritizing interventions. He/she can also implement interventions and assist parents in implementing home-based interventions as well. The AET website has a directory of professionals you can check out.
Oh wow, that's really interesting. I didn't even know there was such a thing, but I can see this being a huge help for some situations. We don't have any located anywhere near to us, but I'm glad to know about them. Thanks!
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Anyone know of a place that helps with interpreting all these test scores from a NP evaluation? I've tried googling without much success.
I am looking at all of these numbers trying to figure out what they really mean. I already had my hour meeting with the NP for results, but I still have so many questions now that I can actually see some of these numbers. Some areas that seem low to me don't seem to have been discussed in the results/diagnosis at all? But maybe they don't mean what I think they mean! Lol
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You could ask the SR director if *she* thinks a 2nd opinion would be warranted and for a referral to a psych who might be good to do it. ;)
Yeah, that's a good idea. Why didn't I think of that?! So obvious! Lol
Thanks!
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My local SR absolutely identified the dyslexia but perhaps they aren't "official". DS was enrolled in a private school at the time, and we proceeded straight from the SR to an NP.
The ADHD inattentive is all the info that you need to justify the reading helps. If your DD is struggling and not moving forward with you AND assuming you can afford the tutor, why not get her the helps?
A word about O-G tutoring...When done correctly, there is an intensity to it. I sat through an hour of son's tutoring with a certified Wilson tutor, and the experience blew me away. A good tutor will draw the student back in when they start to drift or lose focus. There may be tears, but O-G tutoring with a good tutor can reap huge benefits. Yes, the cost is worth helping a motivated student gain access to print.
Yes, I know all about the intensity! My 2nd son, who is currently being tutored at the Scottish Rite and actually has the official dyslexia diagnosis, tells me this at least 20 times each tutoring day (of course, to me, it sounds a lot like whining and complaining....lol).
And yes, I am definitely going ahead with the tutoring for her. One of the SR tutors will be doing the tutoring, but offsite, and we will be paying her until dd's name comes up for tutoring at the SR. Then she gets 2 years free at the SR.
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State licensing laws may dictate who can "officially" diagnose dyslexia so that's why people's experiences with Scottish Rite may vary. The one in my area has SLP's and ed therapists. They run a lot of the same tests as part of their assessment but it's only for therapeutic planning rather than official diagnosis.
Well I just fell down the rabbit hole trying to research this! Wow, what a mess. Why on earth does this have to be so difficult to diagnose? So many sites (in my state) saying how hard it is to get a diagnosis and after reading about all the expected test results and variations, I'm more confused than ever!
I am going to ask the Scottish Rite director whether she can diagnose. I'm thinking not...I think the tests they do are just for planning like you said.
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You could take your report and scores for a 2nd opinion. If she actually is dyslexic, you'd like to know for when you hit high school so that you have the paper trail to skip foreign language, etc.
I like this idea. How would I go about doing this? Another neuropsych or....?
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I have to dig out my paperwork, but 8 years ago my DS was diagnosed dyslexic by Scottish Rite. They identified him by looking at three low areas and compared that to a test that measured his ability. I later learned from the NP that we were lucky to get the diagnosis because his scores were low average. The IQ score absolutely confirmed the Scottish Rite diagnosis.
If your DD suffers from attention issues, processing speed, and working memory issues than she likely needs an O-G certified reading instructor that can modify and alter teaching materials on the fly. You see her testing results, so you know where any weaknesses lie. Any or all those issues could confound her ability to read. Treat her like she is dyslexic because here is the truth of it: the recommended helps for reading remediation are just about always the same once vision, auditory, and any OT/PT issues are sorted out. She will need multisensory, direct, and systematic reading instruction.
This is an aside, but you could take an O-G class over a two week period, learn the techniques, and teach your DD yourself. In my area, O-G classes are taught at the local dyslexia school during the summer. They only teach people with a 4 year degree. My local Scottish Rite used to loan out tapes that parents could use to teach their children, and the loaner tape service was free.
Good luck!
Really? I wonder if our Scottish Rite can diagnose dyslexia? Do they all? I didn't think so because of something I read 3 yrs ago when 2nd DS was on the wait list, but maybe I am wrong. I will definitely ask the director about that. Ours is a pretty small place, but I will ask about loaner tapes as well.
Dd has a diagnosis of ADHD (inattentive) but testing didn't really show problems with working memory or processing speed if I'm reading the reports right. Her working memory was the lowest of the WISC-V subtests but I'm not sure if it's a big enough difference from the others to matter? The testers didn't say anything about it.
This is helpful, thanks. Dd is anxious for tutoring to begin (just one more week hopefully!) and your post makes me feel better that I won't be wasting money on this for her. I did get the official letter of acceptance from the Scottish Rite and she is actually only a year out on the waiting list since she got moved up due to her age.
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I would also encourage you to get evals now. I didn't and regret it. So many people said oh, he's a boy, he'll grow out of it, he's just on his own timetable, he seems so smart, he's just fine, etc. I tried to remediate what I thought was the problem but just ended up confusing the matter probably. Then when I did get them, it was through a children's hospital that had such a backlog of kids waiting to be seen that it took a year (plus several months to even get an initial call back for making the appointment to begin with) and then they drastically cut back the amount of testing they did to try to get kids in faster. I should have done my homework better...they didn't tell me anything I didn't already know. It took almost two years for me to get up the courage/fortitude/money to try again with full neuropsych and then another wait...only 5-6 months this time.
If I could have a do-over, I would have called a lot sooner to begin with, probably 4 years sooner, and I would have used that wait time from scheduling the appointment to the appt day to really research what kind of info I was going to get out of it. Then hopefully I would have canceled that children's hospital appointment and realized I needed better. Lol. But now I'm here with a teen boy who doesn't want anything to do with therapies and tutoring and such. But he clearly needs help. Things got slowly worse not better.
So, I'd encourage you to do the evals. Don't take my path; I can't recommend it.
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The director said she put her on the waiting list because she said her scores clearly showed she could benefit. She thought DD's phonemic skills should be a lot higher given her IQ. I don't think she can say it's dyslexia though, even if she thought so.I haven't read all the responses; however, I cued on this. As I read this, the director did not identify your child as dyslexic, only that she would benefit from tutoring and placed her on a list.
I am assuming that the tutoring will be O-G based, which is explicit, systematic, and multisensory. A student does not have to be dyslexic to benefit from direct, O-G based instruction.
Perhaps, ask the Scottish Rite why they agreed to see her. As a service organization, I doubt they exclude everyone but diagnosed dyslexics.
I have a hard time deciding what to tell DD. She was relieved hearing she qualified for tutoring and asked if that meant she is dyslexic like her brother. She has a lot of anxiety about doing well and low esteem over her struggles in reading and spelling. I think a dyslexia diagnosis would make her feel a lot better, but I can't really tell her she has it!
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SLD = specific learning disability. It's one of the categories under the Federal IDEA law that qualfies a student for IEP services.
Right now my DD has the primary category of autism with a secondary category of Other Health Impairment for her ADHD. If they ever schedule the IEP meeting that I requested at the beginning of February, she'll get the Hearing Impairment category added. Not sure yet whether it will be the new primary or just an added secondary.
If the neuropsych determines that she has dyslexia in addition to the other issues, then SLD would need to be added to the IEP as another secondary. The IEP drives services so all the applicable categories need to be listed on the IEP.
Okay, thank you. Makes sense. I see that listed on their reports now.
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