4KookieKids
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Posts posted by 4KookieKids
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48 minutes ago, Lecka said:
I don’t know if it’s possible for you to when an OT consult with her, but it might be helpful.
I think they have a lot of game ideas and supported-sitting ideas (if it’s what they recommend) for w sitting, if it’s something where she can build up other muscles or whatever.
I have a good impression, when I have seen stuff.
Both my boys have qualified for OT but for other things.
This is where we run into the wall that I mentioned in some other thread regarding my son, in terms of there being a severe dearth of providers in my area. Dd has been on waitlists for OT for the last eight months, and there are still no openings in sight.
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9 hours ago, PeterPan said:
STNR would make sense, and it's super common. Testing reflexes is funny. I tend to under-identify, because the symptoms are not like all/nothing. The reflex can be *partially* retained or partially present. So yes, if she has STNR retained, that's probably why she's having such a wicked hard time in the VT. It only takes 40 days of consistent, daily effort doing the exercises to get the stupid reflex to integrate. Seriously. Instead of retesting to prove it's not, my two cents is go ahead and start doing the exercises, 3-5 times a day, every day, and commit to the 40 days. And maybe retest the others and see if there were some with subtle symptoms.
For my ds, doing the exercises for the retained reflex was challenging and uncomfortable. That's actually how we knew we were on track, because they got more comfortable (less uncomfortable or annoying or irritating) as the reflex began to integrate. Now it can be that the reflex is there and your dc will do the movement for the exercise so quickly or imprecisely that it won't really work on the reflex and won't feel uncomfortable. But if you're doing the exercises slowly and accurately, it may be obvious it's hard/useful to her.
Ok, so I googled for STNR and Pyramid of Potential, because that's the instructions/system the PT we used used with ds to get his reflexes integrated. Here's a link on her take on STNR and vision. http://archive.constantcontact.com/fs146/1103098668680/archive/1120218962790.html Kinda makes you wonder why the VT doc didn't know enough to test/treat this. Terribly common. Also, there's a whole book on STNR/ATNR and ADHD symptoms Stopping ADHD
Wow those articles are crazy. She has almost every issue they mention, from the adhd symptoms to the W-leg shape while sitting. I’m slightly creeped out by how many of those things fit her (not to mention all the vision issues).
eta I can test again but I actually felt like all of them were super obvious. DS9 had a couple that were exactly what they said might happen (elbow obviously bending when rotation head opposite direction, for example) but the ones that I didn’t flag seemed like the kid held perfectly still (which was equally odd because they’re usually so fidgety). They really enjoyed doing the testing though and asked me to do it again the next day. Lol.
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Her vision therapist actually tested for retained reflexes. And I did at home too. The only one that either of us flagged was the stnr one because she arched and curved her back when I moved her head up and down (VT didn’t test this one). But I’m planning to do it again amd ask her to hold the position this time and see if she actually can. I hadn’t asked her to hold it if possible and I’m wondering if the arching is a function of how I tested them because every single one of my kids did the exact same thing with their backs. Lol. Maybe it’s not a fluke but I wanted to wait. Week and try again.
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Ha ha. Thanks. You know, it took me a whole two weeks to figure out what the vision therapist identified in five minutes... Dd had been telling me during her Broch string exercises that she only sees one string most of the time (instead of the X that she was supposed to see). I finally figured out that focusing on that bead was just so difficult for her that her brain is just suppressing her vision in one eye on a regular basis. It completely blew my mind.
Also, related to vision stuff, I read back through her initial report and found that she scored *under* the first percentile in some areas like visual closure, which is supposed to be very strongly related to guessing words. All interesting things for me to ponder, because so money of dd's issue seem like they have similar-looking symptoms (i.e., struggles to read, guesses at words, etc.), and yet the underlying issues are much more varied (can't focus on the text, poor visual closure skills, can't blend, can't substitute/delete/add sounds in words, can't tell syllables, etc.). I can only imagine how frustrating all of this is for her!
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I wanted to update a little bit: the last three therapy sessions with her NILD person went amazingly, apparently. She told me that dd made real leaps and she was really encouraged by that and hopeful that we’ll see big changes soon.
We ordered LiPS and will see what we can do with it. I read through the free OG stuff and thought it looked like really good stuff! I’m hoping to start it in a few months after we giv VT and LiPS our best shot for a while. I figured out that she’s less resistant to VT if we don’t do it first thing in the morning. She says she just can’t do it when she’s tired which I thought was fair enough. Her eyes are much weaker than I thought based on the standardized scores I got back ( A few things like visual closure and visual form consistency had her scores beneath the 1st percentile… ) so we’re really just going to focus on that and just continue clapping syllables and Liz’s nonsense word game and the like for now.
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I’m aiming for the party to be two hours, including a light meal (she is easily overwhelmed and overstimulated, hence only the three guests).
These are all great ideas! Thank you! I’ve been banging my head against a wall just trying to figure out how to give her the party she wants, while still making it fun for her friends. She’s a very shy, anxious child, and she’s be devastated if her friends didn’t like her party. Figuring our how to reconcile that with her dance obsession left me scratching My head! Lol
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So I have a dd turning 7 next month who has her heart set on a ballet birthday party. She's a bit ballet-obsessed. The cake with the pointe shoe frosting, I don't mind doing. But I'm a little concerned about her other ideas of what she wants her party to look like. Basically, she wants to do with friends all the things she loves to do: watch the Snow White ballet off of youtube, dress up in ballet outfits, and then choreograph and dance for another several hours. Thing is, I find it doubtful that the friends she's inviting (only three friends) care much about ballet, much less want to sit through a 2 hour youtube video of a professional ballet (even with snacks...) Is there any way to ease up on the dancing requirements imposed on her friends with more casual ballet games/activities or make this work (e.g., if we found cute little tutus and leotards for under $5 from Amazon, would a tutu party favor be enough to entice non-ballet-loving girls to dance for an hour)? Her friends aren't anti-dance -- they just lack the single-minded obsession that dd has. Just looking for ideas here! ?
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Search for neuropsychologists in your area. They did my kids. Granted, there were other issues at play, but because of the other issues, insurance also covered it.
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Thanks for those resources! We do super flex and I read the explosive child a few months ago. That one was hard because the sheer number of issues that should be addressed was overwhelming to me.
Sorry, OP. I really wasn't trying to hijack the post... I was originally just intending to voice solidarity with the article regarding "mild" or "high functioning" autism... Though it's always so good for me to experience the support on this board. It's hard to find another place where folks really get that a gifted kid with disabilities might *seem* normal for a while... but that doesn't mean they're "normal."
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4 hours ago, Moved On said:
4KookieKids, in case it wasn't clear by my previous comments, the above post was FYI for you.
Know, also, that their behavior at ages 8-10 will not be the same as 10-12 and later in the teen years. They are called developmental delays for a reason. Sometimes, however, when there are other labels in the mix or if anxiety kicks in as they get older and the responsibilities grow, new concerns can arise. But anxiety and anxiety meds are so common in the general population without ASD these days that it is not really alarming for people on the spectrum to also develop it, given certain challenges unique to ASD like SPD. Some will be able to deal with anxiety using CBT and mindfulness strategies, while others may need a combination of meds and strategies. Some may be lucky enough to have a good psych/ neuropsych that guides them through the process and makes recommendations, while others (like my family) have to educate themselves in order to find the best solutions to tackle whatever challenges come along. It is why I am teaching CBT and mindfulness strategies to my two boys. I'm hoping that if they become a part of life for them, they will always have them to help them through any challenges they may face.
I hope you find the best approach for your boy,
M
Thanks. I definitely didn't realize it was to me. ?
How do you go about educating yourself on these things to help your kids? I feel completely dependent on our psych. I happened to accidentally do a bunch of stuff recommended for ASD kids when he was younger, our psych at the time said, which is probably why I (and everyone else) underestimated the extent of his struggles. But lately I often feel helpless and like I have no idea how to help him. I hate driving around to all these therapies. I’m not anti-therapy, and he really likes his psych, and the OT is GREAT for him. But I also feel like 45 minutes with the psych twice a month (they are really over full, but all of them are in my area) just doesn’t even begin to cover the support we need. And HE is starting to feel it more and it’s affectig his perception of himself and his role in our family, because he feels like he’s always in trouble and all we do is fight (even when we’re not fighting and I’m just correcting something mild). I think that the sheer volume of correctionr/redirection we deal with makes even the insignificant things feel significant to him, so if I could somehow decrease the number of interactions we have that he perceived as negative, it would actually snowball, because he'd feel more at peace with things, and then the ones that really are small potatoes with not seem like big ones in his eyes. Maybe.
I’d love to have some better resources for teaching him and myself and my other kids mindfulness and cbt myself.
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Thanks Lecka. There really is nothing in my area though. I’m on a waitlist for a place that does satellite stuff an hour away, but that’s it. Last time me I posted about this child, you and PeterPan had so many things to say and encouragement about finding a behaviorist and getting help and I spent a month calling every lead and every referral on possible lead for close to two hours a day. It’s possible things have changed in the last three months. Realistically, I don’t live in a complete void- it’s just that I live in an area where there are so few providers that all of them have waiting lists several years long...
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We do this every year (even though the tradition is only supposed to be your first year). We have included a nice set of markers/coloring pencils, nice journals/notebooks, swim goggles (they’re always losing them!), magnifying glasses, binoculars, fruit, chocolates, foUntain pens, and a wide variety of other things that wouldn’t usually qualify as gifts at birthdays but don’t really qualify as real needs during the year.
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Wow. That article was hard to read. Mostly because it feels like something I could’ve written... I’m not doom and gloom I don’t think, but it really is hard sometimes... DS9 is so smart and so eloquent and insightful, but he’s also so... unpredictable. To me, at least. Probably more predictable if I thought like him. One thing that concerns me is just that life with him only seems to be getting harder, and this is something I think about when deciding whether or not to do certain interventions: at 3, he easily passed ad normal with odd quirks lining up how toys and such. At 5, somewhat less so. At 6, he still passed as normal but quirky outside of the home, but home life was becoming chaotic. At 8, things really spiraled out of control and he started yelling at me and hurting others more accidentally. I worry about what’s coming next, I guess. But I also feel like those outside the home just see “mild” autism (even though his official dx was ASD-2), or they don’t see autism at all and it’s like they just assume that my kid needs discipline and I’m overreacting and incompetent that I often feel overwhelmed or like I had a really hard day. He’s so smart- he can figure these things out, right? Right...
I’m probably rambling now. I like everyone else’s suggestions. We’re in an area where no one would do ABA for a kid over five anyway. We did have access to a wonderful social group run by a certified therapeutic recreational specialist. It was a total of four boys all with high functioning autism around the same age. I’m so glad we had that opportunity and hope to do it again in the future.
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I'm overwhelmed by all the ideas! Thank you all so much! I really appreciate it! Maybe I'll come back to this conversation once I've spent the next week or two reading up on all of these resources! ?
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4 hours ago, 8FillTheHeart said:
Latex is a way to create formatted math documents. Matlab is a like a math calculations program. They are not related in any way that I am aware of.
Yes. Precisely. Latex is all about creating a technical mathematical document that looks nice. Matlab is more like learning to code/program (it’s sort of similar to coding in C). I’ve used both extensively and there is about zero overlap in their functionality.
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Sorry for the short response. Will respond more later when kids are busy. ?
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My only concern with drilling fluency is that it will encourage her to memorize more instead of sounding out left to right. Thoughts?
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I wouldn’t say that she has a “wall” when it comes time for reading practice. I would say that she has a “wall” when it comes to reading itself… What I mean is that her biggest source of frustration is actually trying to read her own material. That frustration boils over into reading instruction, but it really only becomes a big deal in the reading instruction if she feels like like she is being forced to read boring things. The bulk of her frustration is actually not against learning to read, because she really wants to learn to read. The bulk of her frustration seems to be that she keeps trying, and still can’t read the books she wants to read. So last Spring, Sometimes she would read an entire chapter, and once even two chapters, out of the kingdom of wrenly book that she wanted to read, so long as I sat next to her and provided significant support to her, so that she was able to make it through. Part of me just wonders if this might not be the way to continue, or if doing this will establish in her bad habits of guessing and such. She can read the book she wants, so long as I am at her elbow helping her the entire time, helping her sound them out, showing her how to split them into syllables, reminding her of what certain phonograms say, pointing out a silent e at the end of the word. It is sometimes exhausting for me, but I love that it gives her a measure of success, and she feels so successful and accomplished afterwards.
So yes, I think keeping things positive and short is important. But I also think something intense that will get the job done sooner rather than later might be better for her, so long as we can do it intensely in under 10-20 minutes (20 min seems to the point at which she can’t do anymore).
Regardimg the VT: no, she’s not very far along, but we are fairly certain that her Vision issues are independent of her phonological issues, since the phonological issues were tested orally, and did not ask her to read anything off of a paper.
I will definitely make sure she is a part of the curriculum choices process, since she does have strong feelings about what and how she does things. Even a good program is worthless to us if she refuses to do it. ? Although I think she need something individualized, I have also just been wondering if there might be some sort of group class for dyslexics somewhere, Or group therapy, because she seems to stay engaged for much longer when she’s learning from someone who is not me, particularly when she’s with other children. I don’t know, and I suspect nothing like this exist and even if it did might not actually be a good fit for her, and I certainly wouldn’t want her to start feeling ashamed or embarrassed in front of others. But she works a lot harder when trying to read her younger sister a story, for example and gives up a lot less frequently, then when she is trying to do it just for herself.
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Wow this is a lot of information! Thanks!
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38 minutes ago, Pen said:
after I know you have gotten the message above I will delete the quoted part from High Noon online catalog in case it violates WTM policies to quote that much
I got it. Thanks. I guess I found the wrong thing because most of what I saw was a large collection of books and it seemed that you’d have to start buying tons and tons of books. I’ll go check into it more thoroughly!
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On 7/21/2018 at 12:17 AM, PeterPan said:
Well then it's your lucky day!
http://www.fcrr.org/curriculum/pdf/GK-1/PA_Final_Part2.pdf
http://www.readingrockets.org/strategies/syllable_games
Those are the two things Barton says you need to do and they're FREE. You don't even need LIPS.
...
If you *do* happen to decide to focus on the VT for one month (not 6 months to a year), you might also do RAN/RAS work and work on building up her working memory with games. Those pieces will make the rest go better too. To decode and encode, she's going to need to hold increasing chunks in her working memory.
Are you suggesting to only do those phonological/syllable exercises and not do OG? OT just that she’ll be ready for OG after those?
Also, continuing her enigmatic issues: she blew the RAN section of her test out of the water. Kid has seriously awesome processing speed that she uses to compensate for her low working memory. Same kid couldn’t list more than 2-3 names that start with S or foods you’d eat for breakfast (as many as you can in a minute) though when the got to that portion of the test though... Too open ended, maybe? To help with memory, we’ve been doing a lot of memory and headbanz and other games, as well as an interactive metronome type app.
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She only just started the VT and it’s over an hour drive away with four kids. So she had her first appointment and the plan for the next month is to see if we can make good progress going every other week instead of weekly but I’m not sure that’s going to work out since she has such a hard time doing the exercises at home. Lots of tears, lots of complaining her eyes and head hurt, lots of complaints that it’s just too hard and she can’t do it, and lots of flat out refusal. I bribe a lot, but it only gets me so far.
But you’re right: it is a lot for her to be doing that at all he same time as working on all the phonological stuff as well.
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49 minutes ago, PeterPan said:
She may not be reading well enough for a while to access what she wants to read, and her giftedness is going to make that much harder. She's going to be compelled to read things she doesn't want to read and won't be reading what she wants. This means you probably are gonna need to fix your tech situation. You can use a kindle fire, turn on the parental controls, lock down the wifi so it won't turn on without a password, and put on it only the books you want. That's what I do. Not a regular tablet, not the kid version, not an ipad. It's the kindle fire using their parental controls. You'll have very definite control.
If she's diagnosed, you would do well to take the documentation to your ped and get him to sign the form for BARD/National Library of Congress. Incredible resource and FREE. It is unrealistic to assume her reading will come enough in the next year or two to enable her to read what she wants at the rate she wants. It MIGHT and mercy may it. But I'm just saying be realistic, get the audiobooks for free, get the tech issue nailed down.
Ha, hadn't seen Pen's post! Well there you go.
Unfortunately, yeah, budget bites.
Did she fail A and B of the Barton screening or C or all three or?? Barton says you shouldn't need LIPS if she only failed A and B. So make sure you're interpreting that test correctly. You wouldn't want to be buying LIPS if you don't need it. No, I don't think the Rooney materials are hitting the early phonemic awareness, but I'm not sure, haven't looked through them. But see what your Barton screening said. Take deep breaths. You can do this. Eat a pan of brownies. You can do this. Or as they put in the Talkies (LMB) manual, You can do anything. I kid you not, they actually put that in there. You can do any of this if you just take deep breaths and give it time to click in your mind. You can do things you didn't think you could do if you just stay calm and give yourself time.
That's why you don't rush. Fix the tech to take this pressure off you. A kindle is like $69 right now, seriously. Get it, turn on the parental controls, download acceptable stuff, and lock it down so no purchases, no wifi, nothing. You don't even have to leave the apps on. Seriously.
And she's learning German??? And she's reading German??? We had someone (matryoshka? I forget) who said her kids went through SWR and still couldn't read even though they could spell. It *can* happen. Have you done fluency drills with her? Your WRTR/SWR stuff is RTI1, and it really isn't explicit enough on syllables. But it's still really interesting that the dc is spelling but not reading, reading German but not english, on and on. You might want to put the words into Quizlet and drill them to fluency. That's what I did with my dd. Was her visual memory low in her VT testing?
Are you drilling the phonograms enough? It doesn't seem like you can be implementing Spalding with fidelity if she is supposedly spelling well for it but not able to syllabicate and divide words into syllables. The syllabication techniques are the SAME for WRTR/SWR and OG. WRTR/SWR is OG lite. There is no difference. So is she dividing her spelling words into syllables and tapping out each sound before writing? Or has she been refusing and just writing the whole word?
Ok, your shortcut of the week. When you download the Rooney OG manual and start reading, it's probably gonna tell you how they teach syllables and it's probably gonna say something like listening for vowel sounds. It's not so rocket science. The manual is free. I suggest you download it tonight, bake a double thick pan of brownies and put on coffee, and just start reading. And maybe like throw it at the wall a few times but perservere, kwim? It may be you've got some holes here in your implementation that could be patched that would help you use ANYTHING better. This stuff is not about what you're using, because honestly what you were using (WRTR) was fine. The issue is not realizing why you're not getting the results. So if you go to the full bore manual and READ it and pour over it till you get your brain wrapped around it, then maybe you'll find what pieces you missed.
It could happen that way that you read the manual and it comes together for you. It would be a free option. If not, at least the brownies were good.
You’re right about the kindle fire, and we even have one, so this is doable. Hopefully the bookshare thing will come through before too long and we can get more audiobooks for her. It’s definitely the case that the longer we wait, the more quickly her listening/interest level outpaces her reading ability, creating an ever widening gap.
Yes, I believe she’s officially diagnosed. The diagnosis is something like symbolic dysfunction, though, which they told me was basically the billable term for dyslexic and that anyone in the business will recognize this as dyslexia. The report frequently mentions dyslexia and dyslexic tendencies, but the SLP wanted to give me something billable (even if our current insurance won’t cover it.)
On the Barton screening, she did missed 1 too many on A and B, but actually did ok on C, though she was pushing the limit on how many she was allowed to repeat. I must have mis-read the sheet on what comes next thought – I think I must have switched in my mind the “passed C / failed A, B” page with the “failed C” page and gotten those next steps completely backwards. … Oops!
Yes, she understands German, speaks it well enough to communicate in Germany, and can now read very basic things like “Mama ist da.” This is the stuff that she’d refuse to read if it were English because it’s too boring and mindnumbing. But she accepts it in German (so far… knock on wood.) In English, we’ve done fluency drills, we’ve done nonsense word games, we’ve split/tapped/clapped syllables until I thought my eyeballs might fall out of my head, etc.
Yes, her visual memory was low on her testing. And yet, she memorizes tons of words when reading, which makes no sense to me. She really is a bit of an enigma to me. As for the spelling thing, she doesn’t spell well on her own, but I am supposed to give her the correct phonogram for each sound (e.g., “red” is “r”, the phonogram that says “e, ee”, “d”, and so long as she knows that “e” is the only phonogram that has precisely those two sounds, she can spell the word). In a word like “read”, she doesn’t have to guess if it’s “rede” or “reed” or “read”, she’s told that the middle sound is the phonograph that says “ee, e, ay” and she knows that that can only mean “ea.” So yes, we’ve drilled phonographs a TON. She still sometimes struggles to remember them. The syllable divisions in Spalding are nigh impossible for her, and I always help her with that, using the hand motions and all. But she does often sound the word out by splitting it up into its sounds on her own.
Ha ha. Love your comment to eat a pan of brownies, though I don’t drink coffee. I’m trying to download the manual now, but my internet is wonky and my phone screen is tiny. Lol.
Thanks for all the encouragement. ?
Sorry that I was having problems getting the HTML editor to work and thus couldn't reply in-line... I know it makes it harder to follow!-
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After looking at them a bit, I’m wondering if anyone can tell me if the free Rooney one would be comparable to the LiPS?
Trying melatonin with ds
in The Learning Challenges Board
Posted
Aw, sorry to hear it had such side effects. ?