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4KookieKids

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  1. Yes, I believe insurance will cover it... but I've never had issues with insurance covering stuff, so I don't really know. I don't know how good our children's hospital is, but I don't think it's mainly a teaching hospital. I think autism is also the specialty of the private person, but they're younger and don't have as much experience. I believe the clinic is a diagnostic team, but it doesn't list SLP and OT and all of that on the website, mainly psych, behaviorist, and geneticist. Maybe there are others there that just aren't listed? It is a wham-bam-done sort of deal at the clinic: 3 hours of eval, and *then* the consult with the parent to discuss results, all in one fell swoop. We also did not have great experiences with a neuropsych. I had no idea that hospitals have a wait list that long. Wow. That's crazy. The intake is for both the 7 yo and 3 yo, as is the referral. Thanks for your thoughts. I was thinking I'd keep the intake appointment, because meeting the person and being able to talk about things face to face is important to me in judging character and whether we're clicking and they're really listening to me and taking my concerns seriously. I just wasn't sure if insurance will cover both evals (though it will be a non-issue if the hospital wait list is 9 months, because we won't be waiting that long!) I'm more skeptical of a large clinic, but that's just me...
  2. I have no idea. We already had an appointment with one person for an intake next Tuesday, but it is not the same person as our doctor referred us to. We got referred to a special autism diagnosis clinic at a children’s hospital a bit over an hour away because our Ped really wanted us to see someone that does autism all day every day in order to have the best chance of getting a good eval. they’re supposed to Be calling us back to set up an appt within a few days, so I’m not sure if I should cancel with the other person I scheduled with (who was recommended to me by an autistic mother-daughter pair I’m acquainted with).
  3. Well, our ped referred us for evals for both my 3 and 7 yo, based on what I shared. We'll see what they say, I guess! I have to say that I watched this video on Autism in girls, and if the place we're referred to knows any of this stuff, I'm about 99% positive my dd7 will get the dx. I felt like every single thing he said about girls up through primary school described her to a T. It was uncanny and almost a little bit creepy because I found myself nodding along to every single point except the tomboy part (and then he mentioned that that often comes later and younger girls are all pink and frilly and ultra-feminine, so it still fit our situation.) https://vimeo.com/122940958?ref=fb-share&fbclid=IwAR2nhMU4v_y2u8kvhgSFAtjhT75lRGeEMv6N6z_s9QriiXWC9Sozem0JOFY
  4. Ok. Will do. I also have at least a bit of leverage, I think, given that we were concerned about this two years ago: https://forums.welltrainedmind.com/topic/636343-interpreting-dayc-2-results/ She was much younger then, of course, but her social/emotional and communication skills were around the 16th %ile then, and while her communication skills have really improved since she had tubes put in and can actually hear now, I think the social/emotional issues just never actually got better, as we were hoping, and may possibly have gotten worse in the last six months. ETA: She's clearly not "delayed" in the initial sense that I was concerned about two years ago. I would guess she's every bit as intelligent as her siblings. So I'm not really sure why she was globally kind of low at the time. But oh well. 🙂
  5. Yes, I think I was going to separate various observations/concerns by DSM criteria, and I was also going to print out the checklists I've seen for "autism in girls" that the "Ask me, I'm autistic" fb page has, and then just highlight things that describe my daughters.
  6. She's not done enrichment classes. While gifted, she doesn't fit in with a lot of gifted stuff at this point, since she's dyslexic and can't read proficiently yet. I feel that the reading struggles really turned her off to most things that are academic (her math started lagging, etc.), and she really turned to music as something she wanted to focus on. She's had the ELLA for language testing, but I don't think she did anything narrative language. I'd have to go back and look at what her scores were. She does have vision issues (even q-bitz jr is super challenging for her).
  7. On the contrary, I already did an intake with a local psych office (someone new who's supposed to know a lot of stuff about autism and specializes in the ados) and I have an appointment with my ped on Wednesday morning to discuss midline, autism, whatever else I think of. Part of the reason I was asking what you took for red flags are that I think some of these things seem so normal to me, that I don't actually know what the red flags are. It all seems like something that someone else would gloss over. So I'm preparing notes to take in to the ped, and was going to make sure I include anything you thought was a flag. At this point, I trust you and PeterPan enough to take what you say seriously. 🙂 Plus, there's the issue of potentially losing insurance for a while in a month or two, so I might as well act and eval now while I actually have good insurance. I'm going to talk with them about both of the girls that I've questioned about. If they say it's not autism, then that's fine. But I think I'd rather just do the eval than continue to waffle. I fear that they're going to say it's not autism, even if it is, because of gender differences and giftedness. But there's nothing I can do about that, and I've done the best research I can. I just can't seem to uncover anyone who does gifted, girl autism near us. Shoot, when ds was getting eval'd, I couldn't even find someone who did gifted autism near us.
  8. I’m a bit confused on this because someone gave one of my kids an ADOS a few years ago ( we were participating in a research study at a local university) – NOT one of my children being discussed in this thread – but I thought it was administered by an adult, and thus would not notice any social interaction issues with peers. It was just done in my home, with books and toys and dolls . Is that the same thing as what you’re saying? ETA I’m just wondering because dd3 sometimes does just fine with adults (though only sometimes).
  9. I’m sorry- my last long post was a mix of notes on my 7 yo (first part) and my 3 yo (last part). I’ve got lots of thoughts going all over the place!! Sorry for being confusing. i will think about taking videos of them in class. That’s a great idea. Might give me a lot more to work with than just my own recollection. 🙂
  10. PS. Sorry for anyone else following this. I realize that we've gotten completely off the topic of midline stuff.
  11. Those are all such interesting ideas, and I really appreciate you taking the time to write them all out. It gives me lots to think about. In particular, as I've been reading more about autism in girls, I've been reminded that we considered an evaluation for dd7 for a while as well. She has major flags of special interests (was dancing ballet 3-4 hours a day at age 4, still spends 4-6 hours a day watching or dancing ballet four years later), social struggles (struggles to make friends, relates better to younger girls, studied imitation of other girls, meltdowns after group events, lots of foot-in-mouth situations), sensory issues (she's in OT already), and a number of comorbidity concerns (dx'd with anxiety and depression at 6, concerns over bipolar, dyslexia at 7, but the anxiety and fear are the worst ones here), and brain function I can't even imagine (hears when violin is tuned correctly or if it's off even by a fraction of a note, without even using a tuner, was able to transpose a new song on the spot into six other keys just by ear, one right after the other, without any knowledge of key signatures, on the same day as her teacher taught her what transposition was), etc. On the other hand, she's very flexible if our plans have to change and is unlikely to lose her cool, she's an excellent liar, she seems to understand a fair bit of social stuff, because she's extremely good at manipulating people to get her way, she often shows real insight into people's motives when discussing a story or why someone acted a certain way, and she makes good eye contact, picks up on someone else being upset, etc, which are all things ds struggles with that are supposed to be more typical markers of autism. So we never pursued a dx, and just figured that some flags don't always mean autism. But you're absolutely right that I think I normalize a lot of flagging behavior, because I homeschool and it's just our daily lives. Until ds was dx'd with autism, I had no idea that running around the house and howling like a wolf for an hour wasn't typical for young children. No idea at all. lol. So my idea of what's normal and expected is all out of whack, I know!! Dd3 definitely struggles with any sort of peer interaction. It's helpful that you point out that siblings don't count, because I would've said she does great with her siblings and "only" struggles with kids outside the home. Sometimes, a teacher tells her to join in and she does; others the teachers tell her to join in and she just says, "No, I don't want to be with you all." She's super verbal (more so in the last two months - I noticed that all of a sudden she went from a sort-of normally talking 3 yo (she was a bit late because of partial deafness and had tubes put in around two years of age, so before that she didn't talk more than 15-20 words, so she got "caught up" between ages 2 and 3 I feel) to a 3 yo who is speaking in 15-20 word complex sentences and I was talking with my husband about how she must have had a super major brain leap! lol.), but it's unclear to me how rigid (or not) she is or if there are sensory issues, since she throws tantrums at very unexpected times and I just chalk it up to being a super emotional/volatile, somewhat spoiled youngest sibling. 🙂 Like, yes, she's clingy and cries and buries her head in my shoulder and refuses to let go of me when I go to drop her off somewhere, and yes, this is a new phenomenon in the last three months, but she's also 3, you know? lol. It's a lot to think about, and I really appreciate you giving me extra things to think about so I can think more big picture. It's tricky, because I don't think any one thing is really enough to be concerning - but the lot of them together just feels off. But anyone who's worked with my dd's have only ever briefly considered autism before disregarding it (it comes up just because of ds already having the dx), citing their verbally advanced speech and relatively good eye-contact/social interactions. So I don't want to borrow trouble and see autism where there isn't. But I also want to feel good about feeling like I've done my homework, and we've come to the right conclusion after reading all that we could've and learning all that we could've. In particular, I'm not sure I trust anyone in town to actually know about autism in girls, and I expect them all just to chalk my concerns up to overthinking things and that my girls are just fine and young/immature/etc (maybe just because our psych already has, even without doing a full eval)? When I look at normal autism checklists, ds9 flagged them all in the most obvious ways. Those same checklists do not flag my girls as possible autism. They flag a lot more on the checklists I see for girls with autism -- but those don't really seem like they have a body of research behind them or are as in line with diagnostic criteria and such. It'd be nice if I felt like there were someone around who I could really trust to know about it with girls and they could really rule it out for me.
  12. I'm curious, besides not wanting to play with other kids, what other red flags you see in her situation? It's so hard for me to distinguish between what's normal 3 yo moodiness and what are actual red flags. And I think that when I can't articulate my concerns very well, then we get the shrug off as me making a mountain out of a mole hill. And only later do I realize that I had other genuine concerns but now feel like I've lost my opportunity to bring them up.
  13. Dd7 met with her piano teacher yesterday and played the song she’d learned the previous week. Teacher proceeded to introduce the idea of transposing music (which Dd has some exposure to already), using her new song as an example. Without any real knowledge of key signatures or keys, dd proceeded to transpose her song from C into D, E, F, G, A, and B all one right after the other just by ear. The teacher pulled me aside to say that she doesn’t know many adult pianists that could have done it so naturally and fluently and it was really something else. I couldn’t help but be proud of her, even though I generally try to value hard work over natural gifts.
  14. We do have wedgits! I should pull those out again. I don't think we ever had the cards, but I'll look into them! 🙂 Yep. I have lots of threads about her vision and how much she despises her vision therapy exercises. We got all her reflexes integrated about six months ago, but this is a good reminder for me to check again, since we haven't been as faithful on maintenance exercises as I would have liked in that time. QBitz Jr looks great! I'm pretty sure that whoever did the easy Tangrams with her did something like this too! Thanks!! These look great too! Thank you very much!!
  15. Dd7 has some visual stuff going on, and I'd like to get her working on something that's like Tangrams, but less complex. I'm thinking of something that I saw a therapist do with her at one point (I can't remember all the details of who and where and when, though!) where it was like a tangram puzzle, EXCEPT that it only had 2 pieces, AND they told you *which* two tangram pieces it was. All she had to do was actually figure out how to orient them correctly and lay them in the design (which, I'll just say, was still wicked difficult for her). Presumably, it would've gotten more difficult (maybe 3-4 pieces eventually, or not telling which pieces to use, etc.). I've tried searching for easy tangrams for younger kids/preschoolers, but all I get are normal Tangram puzzles with the pieces already outlined for the kid to match, and this isn't really what I'm looking for. Any ideas where to look? It really does need to be simple. In some research study my kids volunteered for at the local uni, they played a game where you had to mentally rotate puzzle pieces and figure out where they'd go, Poor dd7 scores lower than her sister four whole years younger... 😞 So super easy initially (but with room to grow) would be really good!
  16. I think she's kind of all of the place. She can *always* sound out "p a n," but she often struggles with blends. So she might see "split" and read "slit" or "spit", and vice versa, she often does this thing where she sees something like "spit" but reads "split." (It's pretty common for her to insert an l or r after another consonant blend.) Elizabeth B has been working with her a lot, which has been super helpful, because she was able to identify that dd's biggest struggle (aside from rushing) is consonant blends, and I hadn't recognized that previously. So, so long as words aren't overwhelming (i.e., just *look* long, like "fantastic") and don't have consonant blends, she can read *most* things at this point, if she actually slows down to read carefully. But if any one of those pieces is missing (i.e., she's hurrying/guessing, the word looks overwhelming to her, or it has consonant blends), then she's hosed. Some days she can blend consonants at an almost OK level - others, particularly when she's tired, she has no hope of hitting even a two-letter blend. She's actually starting to get her consonant blends down a bit better in the nonsense word game, but it is not transferring very well to words of more than one syllable. But it's a start! PS: Sorry for taking over some of the initial direction of this thread, OP. I will take it to a private chat, if you'd like, but it's not clear if this might still be helpful to you, even though it's more detailed than you may need at this point?
  17. Thanks so much for writing this! Most of the time, I hear about folks with some similar issues but low WM *and* low PS, whereas dd only has low WM, but wicked fast PS. Thanks for your thoughts on the slowing down, and yours too, @Lecka!! It's kind of funny because sometimes she'll just be flying through something and she'll read a word wrong because she's not *actually* reading it, so I usually just tap it once or twice (I still point to her reading because she does have some vision issues we're working and I just find it's easier to work on vision separate from her reading) to indicate that she should try again. Occasionally she'll read it wrong 3-4 times because she's just trying to fill in something that makes sense in that place, before actually slowing down to look at the word itself. And often (maybe 70% of the time?), once she *really* looks at the word, sounds it out slowly (here I may have to cover up parts of the word so she only gets a syllable at a time, or I may remind her to split syllables between the consonants or some other such thing), she really can read it. (We're not talking very complicated words here, though.) It just sometimes takes several "taps" before she stops to actually read. 🙂
  18. We have been doing your re-reading books ideas. In this case, she's less about getting to the end of the story, but speed is still a problem. It's almost like the parts of her brain that are *not* working hard to sound out a word are just making up the story faster than she can read. So she kind of flits from big/obvious word to big/obvious word, and just makes up a lot of what's in between. It's a real struggle to get her to read what is *actually* on the page (like you said). Unfortunately, for books that she already knows the story to, she is far more likely to just recite the story as best she can remember it, using just occasional word cues from the book. It takes super careful reading on my part to catch her when she skips a part or makes up her own sentence for a part -- if I were just listening to her while cooking or something, I would never know that she wasn't actually reading what was on the page. I'll think about if I might be able to convince her she'll get more out of the book if we read more slowly. It's an interesting idea. I think the biggest issue is that her story-brain is usually several steps ahead of her sounding-out brain, and doesn't really want to slow down, so she just consistently skips a few words ahead with her sounding-out brain to catch up instead of slowing her story-brain down. I'm not sure if that will make *any* sense to anyone else, but she almost rushes more when she knows the story well, because she's more able to remember how the story goes and just make things up as she goes (and they're usually *pretty* close in meaning - even if completely different in actual language).
  19. @Lecka PS. ITts lots of rushing because she just thinks quickly and doesn't want to taker her time sounding things out. I think dyslexia just poses a special challenge to my girl with a processing speed above the 99.7th percentile... She wants the STORY!
  20. Oh, we've completely switched over to audiobooks since that one book-throwing tantrum! 🙂 She has Audible and BARD on three separate devices that she can access on her own (at least 100 books loaded onto each one) as well as her NLS talking book machine that she calls and requests new books for about 1-2 times a month. In fact, we've been doing everything she can to *stop* her from reading (actual books) the last six months, because we found that the more she tried (even just on her own and for pleasure), the more she fell into sight-guessing habits. The only time she is supposed to be reading at this point is with me at her side doing a specific lesson/activity.
  21. This has been our (limited) experience as well. With lots and lots of hard and focused work, dd's reading improved maybe 1.5 grade levels in the last 10-12 months (which was GREAT!! don't get me wrong here!!), but in that same time span, the books she likes and listens to and wants to be able to read went from a 2-3 grade level, to a 4-7 grade level. Boo. So she feels even more behind/incompetent snd even less able to read what she'd like to read. 😛 What did you do for fluency? I feel like dd is getting *better* at words in isolation (e.g., a nonsense word game), but loses all that progress and reverts back to sight-guessing whenever she's face with an actual book.
  22. I hear you. My dd loves the Spalding program (many similarities to AAS/AAR), and even spells pretty well when we're doing the lessons. But as you say, there is no retention. More importantly, the Spalding lessons do not seem transfer over to reading for my dyslexic kiddo. (It worked just fine for one of my others, though, and I still love the program.) I feel like she's finally making progress, but we really had to take it down to basics. Things like "Say fry... Now say fry but instead of /r/, say /l/." "Say split. Now say split but without the /l/." These exercises were almost impossible for dd to do at the beginning. She could sat "cat" but replace /c/ with /m/ just fine. But as soon as we started blending sounds, she couldn't actually distinguish what was one sound and what was more (is "st" one sound? What about "str"?) Given that she *had* been reading roughly on grade level, I was completely taken aback by this kind of massive gap in her abilities. We have spent 20-30 minutes a day working on these exercises (most days but not all) for the last two months, and she's *starting* to get it some days (but still has huge lapses if she's tired or emotional -- just this afternoon, she couldn't turn "tight" into "sight" by replacing /t/ with /s/.)
  23. I would absolutely run and not use her then!! Especially given your other thread on the AL board -- this is EXACTLY the problem we had with my dd! People spent almost a full year telling me she was not dyslexic because of (insert comment about her reading be "about right" or "at or above grade level" or "on par for age, since she's still young" here), before I found someone willing actually do the phonemic/phonological testing!!
  24. FWIW, our neuropsych wouldn't do dyslexia testing, despite that being one of two primary reasons we sought an eval (the other being anxiety/emotional issues). And he never even told me straight up he wasn't going to test for dyslexia, so I was super ticked when I got our results back, and all he had done was a basic reading test - I think one of the Woodcock Johnson III subtests. No looking at RAN, no phonological processing / phonemic awareness, no other language skills at all, nothing. He said that they can't test for actual dyslexia because insurance wouldn't cover it (and since dd was reading "at grade level, she was obviously not dyslexic anyway"...). I countered that I would've paid it out of pocket if he had just *told* me he wasn't going to test for it for this reason! It was hugely disappointing. When we finally settled on an SLP, she did all that was needed and we didn't even need the psych involved. So it would've saved us a *tremendous* amount of money to just do the SLP to begin with over the neuropsych...
  25. My oldest takes his first standardized test tomorrow! It's a first in our little homeschool, and I'll be so proud if he even makes it through the whole thing!! lol. I have no idea how it'll go, since he seemed completely lost when I went over the "this is what the test looks like" packet this week. It may be a colossal fail, but at least he'll have gained some experience (which is the main reason he's taking it.) ETA: He made it through! Exhausted by the end, but still made it through! Asked when he'd get his score and almost cried when I told him about 2.5 months... lol.
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