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Everything posted by kbutton

  1. cuisinaire rod activities (Miquon, Education Unboxed) factoring lots of numbers and then writing out the associated multiplication and division facts
  2. This is a hands-on curriculum for studying ants recommended for junior and senior high. These publications might generate some ideas for you: You could potentially do one hands-on project and one more secondhand project investigating research that's already been done in a particular field. Rare disease, for instance, is an area where genetics is changing lives all the time. You could look up case studies in medical literature, separate them from the results yourself while organizing the study, learn about the potential diagnoses, and then see how she thinks through what might be the real problem with the case studies--it's tons of pattern recognition. My son has a connective tissue diagnosis, and there are a LOT of different connective tissue disorders as well as subtypes of known disorders. Just in the realm of CTDs that have cardiac manifestations, the tangled genetics are crazy-making as it's not unusual for people to have both straightforward mutations but simultaneously have VUS mutations (variant of uncertain significance) for disorders that have overlapping symptoms. It's also not uncommon for these kids to be born into families with other hereditary cardiac issues that are unrelated to their genetic diagnosis. It gets very interesting, very fast. My son's family tree included three different possible explanations for his clinical features, and he had none of them--he had a mutation for something not found in either family, and a VUS for a second related disorder (which is where the genetics came in). If that interests you at all, the add-on would be to potentially also look up studies that use mouse models for figuring out beneficial treatments by disease type because even though the presenting clinical feature might be the same across several different disorders, the biochemical pathways for each disease branch off at different points, leading to different outcomes and risk factors. She could also interview geneticists to see what kinds of real life databases and tools they consult to analyze their patient data. The rare disease community can never have too many advocates, and what your daughter is interested sounds like it could lead to opportunities in that field. If that interests you, these organizations have a lot of good research taking off or are companies that provide testing: This organization, in particular, has a huge advocacy base as well as deeply committed medical professionals doing amazing research. They are a broad tent and would have information that might surpass what you find in the next two links as well. You might also talk to someone in bioinformatics. This list of links looks interesting:
  3. We have had some blended holidays in both my family of origin and in my current family. It works well.
  4. To get over what? This is crazy--no diagnosis, but the doctor is saying it can take months?! I would think that he needs to know what "it" is before making that kind of statement. The dissociation sounds scary--that's like a trauma/anxiety thing, right? Or do they think it's entirely part of the Have you had him tested for inner ear issues directly by an audiologist? I wouldn't guess yes or no by symptoms since you could have multiple things going on. Why an audiologist? They developed the science and treatment around vertigo caused by inner ear issues. Insurance does not always reimburse them though, as the physical therapy field took over that sphere or things (audiologists have developed a lot of things and then had the medical field take over with reimbursement--it's a historical issue). Some audiologists really specialize in this, and since you mentioned auditory processing issues, it sounds like you might have an audiologist already. Is this same doctor that said it can take months to get over this undiagnosed "it?" If so, I think I'd be getting a second opinion. I am nearly positive I read just yesterday that POTS often has a triggering event. You can have a tendency that way, but then some medical issue can make it come out of the woodwork. I really think you need to get that part sorted. I don't have a link for the idea about a triggering event. If I run onto it again, I'll try to post it.
  5. I would say that my DH is very much able to listen to his body and regulate his food intake very well, but once in a while, he gets in a slump and doesn't eat. It's very strange, but it often happens around transitions--shifts close together or farther apart, change in activity, etc. Once in a while, he's just distracted and doesn't notice he needs to eat. If he's really not hungry, eating something won't make him eat way too much. If he's really hungry and hasn't noticed, often just watching someone else eat will suddenly make him feel like eating. Or, he might need to take the first bite, and then he suddenly realizes how hungry he is. I think it's possible that his hunger cues might be different than they used to be. I've heard that if you're eating more nutritious foods and not having as many blood sugar spikes from carbs, etc., your cues change from rumbling tummy to things like a feeling in your mouth that makes you salivate (not sure I'm describing it right). Maybe he's not one to notice those differences (my DH would NOT notice something like that).
  6. With the conversation with the young adult--sometimes that sort of thing where the second person asks and gets more of an answer is just that the person has been primed already. They have more time to have thought of an answer, or feel more like, "Wow, a second person asked the same thing; must be people are interested, so let me be more detailed." Otherwise, I think this is probably a mismatch, and it's also a "problem" of having several kids, presumably boisterous ones at that. So, the have them, and some people don't really respond to big families until the kids are bigger. I am not sure why, but it's a thing. As regentrude mentioned, not everyone will sit with kids unless the relationship is already solid. That's not your fault, and in a small church, it sounds like people are not making the effort. The mismatch...we went to a church for a long time, and we had acquaintances, some friends, but as a whole, we were always the odd people out. Always. We left, and I don't have this same problem at all in the new church. I have made far more connections in far less time at my new church. It's bigger, and they create more low-stakes ways to get to know people. The social fabric has a lot of textures there, so to speak. I also think that sometimes people peg someone a certain way, and then you don't really get over that. In our old church, I was struggling. I had kids with undiagnosed problems, and I was told I was a problem. This is a problem with their thinking and how things played out beyond my control. In my new church, I am a resource. The difference is night and day, and it's largely how the people in my old church viewed cognitive and developmental differences. Ironically, the church was full of kids with these issues, and what made me stand out is that I noticed. New church--people already know this and many of them care and want things to be different for their kids. I really don't think this is you. It's the church. Find someplace that lets you be you. If you don't have options due to distance or not many churches, you might have to develop rhino hide or find a different social outlet.
  7. I have kind of similar sensation with asthma (coughing is my main symptom). It's like I need to clear my throat, but it doesn't feel better after I do.
  8. No direct EF benefit from reflex work, but indirectly, yes. It's one less thing for the EF to be sidetracked by if that makes sense. Connective tissue disorders can also derail the permanence of reflex work. I guess we had one exception to the reflexes for EF--if brushing fixes the startle reflex (Moro?, which doesn't manifest the same way in all kids), then we did find that a brushing protocol helped EF because my son was less hypervigilant, and he didn't go fight or flight all the time. He still needed ADHD meds later on though--it wasn't a fix, just a help. Working on reflexes has never yielded anything negative here, only positive, even when things didn't completely integrate.
  9. Antiphospholipid stuff is sort of an emerging thing in the literature--it's been known in lupus, but it's being recognized for its effects as a disease on its own. I have one identified family member with it, one presumed to have it based on the other family member having it, and then about five generations of symptoms consistent with it that aren't necessarily only heart related. It's associated primarily with strokes and miscarriages in women, but if you google the rare complications people in my family have experienced in past generations (bowel ruptures, for starters) and some of the less rare but still unusual things (leg ulcers), you can come up with ties to APS that are just now being understood. It's inheritance pattern is not known--they think it's a gene plus some kind of event that has to trigger the expression. Cardiologists might not look for APS because it's probably considered a blood clotting disorder, something that affects pregnancy, or a lupus add-on, so if you go this route, you might need to arm yourself with some information. If so, feel free to private message me down the road. APS can be implicated in up to 20% of all blood clots according to some of the literature, but the lesser known effects are quite serious in some cases. Other people have elevated blood tests and never have a serious event. It's just weird, and more research will hopefully clarify/stratify risk profiles.
  10. I have been really worried this would become the case as online classes become more common--I figured it would trickle down to the live classes too and require people to be plugged into their communication 24/7 to keep up. That's egregious, honestly. I think it's egregious in online classes too, but this is worse. Link to the workbook?
  11. We have also done the gear ties of various sizes to replace twist ties or to hang cords in the garage. Other past ideas: pocket knives (found nice ones on sale) mini utility knives with replaceable blades (got rave reviews on those) knitted dishcloths homemade cleaners (if they are from concentrate, you can put them in TSA bottles for travelers, and they can dilute and bottle them up at home) homemade lotion
  12. This is my situation as well, except that I am on Facebook. I stopped for several reasons, including time constraints, the fact that my yearly letter was hard to make cheery (at one point, kids' special needs made it hard to write a heartfelt and genuine letter without being too free with information about our kids), and the circumstances around the holidays were just difficult (DH's work schedule, having to deal with my MIL). Also, my DH never helped nurture connections with far-flung friends and relatives, and by the time I figured this out, I had probably overextended myself keeping up and trying to not offend (pictures to be included were a huge, huge issue with his mother). If he wants his family to be in the loop, he can make some effort. Okay, and getting accurate and up-to-date addresses...ugh. Thankfully my mom would often forward her file to me that had her address labels on it, lol! I would like to be less behind and overwhelmed and start a tradition of the yearly non-Christmas letter/card/photo card instead, but we'll see.
  13. Here is a link with a list of differential diagnoses: Diagnostic criteria:
  14. I think it's definitely worth asking about the bolded--I'd want to know how they determine it's related to rheumatic fever or not related to it and how reliable that determination is. There were heart issues missed in my extended family that should've been detected a long time ago with a good family history. Some cardiologists are not up on their genetics AT ALL. It doesn't hurt to get multiple opinions and to look for a cardiologist that is interested in genetics (and even get a second opinion). So, I had a great-grandparent with rheumatic heart damage, and she ended up with a pace maker. A family friend has valve issues and has had surgery with no complications. She does get a-fib, which makes her really uncomfortable. I don't know if that is related or separate from the valve issue. One of her valve surgeries was open, but I think the other one was (or will be--not sure of the status) done via cardiac catheter. If it turns out to be not rheumatic, one possible thing to consider is autoimmune stuff, such as antiphospholipid antibody syndrome (with or without lupus). It causes valve problems.
  15. I would also add that there are many supports that you have to beat the bushes for vs. having someone just tell you about them or offer them. You'd think that county board of DD help (as it's called here) would be more obvious to people, but it's not, and in many cases, the schools are the gateway to those supports even though you can seek it out yourself. It's just easy for the board to partner with schools. Some schools are VERY gatekeeping. Some board of DD people are gatekeepers. Other times, they are both really accommodating. You just don't know. But a diagnosis means you are eligible for more--the connection part isn't necessarily going to be automatic unless you get a psych that has connections and has really been around the block a few times. It's just a different job from connecting to services.
  16. Having a global developmental disability that can be listed is a game changer in terms of funding or supports, especially if there is no physical or cognitive disability. ASD is considered a pervasive (and global) developmental disorder. Most states have a formula of some kind of global/developmental problem + cognitive + problem with independent living skills to get to a level of funding. They will look at "side" diagnoses like ADHD, tics, etc., but the developmental disorders are the clinchers that take it to the level where funding or supports are given. Often you need two of the three things in that formula. Without and ASD diagnosis, you probably have just the independent living skills issue. Trying and failing at therapy is data, honestly, and it would be nice to have that documented in a case file for where he needs supports in case he needs supports for jobs and such later. Really, I think a diagnosis would be nothing but helpful.
  17. Oh, that's frustrating! Did you have language testing done with the evaluation? The "no writing" thing makes me wonder if that's part of it. Then, remembering things long-term that are less meaningful to you due to a language issue can be tricky. Is the writing because of the motor issue? Does she use keyboard accommodations? With social studies, does it help to do timelines? I have a kiddo with a CTD, and he has a mishmash of learning issues and a lot of motor problems. A lot. It's not always a hallmark of his particular CTD in the literature, but at a conference, we met tons of other families whose kids had motor issues. It affects so much! Does your DD have a lot of fatigue? I am wondering if you need to use study cards, such as Quizlet for retention. I am also wondering if her auditory working memory is good, but maybe not her working memory for other contexts.
  18. Lots about attribution, but she calls it Main Problem and Secondary Problem solving.
  19. Okay, just listen to her, lol! She's giving a great Big Picture overview of all kinds of things with examples. This is applying strongly to my ADHD family members as much as my ASD kiddo. The APD stuff was brief (but helpful) at the very beginning. She's covering a lot of ground, including good.
  20. Scratch that! Today's lady talks about auditory processing and how it's different from other language problems. She's and SLP that co-evaluates with an audiologist. I am not sure how long she spends (still listening), but that's worth listening to if you have that in your mix of issues!!!
  21. I am not hearing a lot either--Kelly Maher was good, but I already had the gist of the "why" to use her stuff, and that is what the session was about. I feel like some of the sessions would've been useful a few years ago, lol! We're just past some things or in a situation where we have our needs met in the areas being discussed. I felt like the 2e stuff was more 2e than I wanted and less about the combination of autism and 2e. I could have missed something though--I was skimming ahead if a presenter got off on something I'd already heard a bunch of times. I might look at the Language Skills session a bit if I have time today.
  22. If you are using GoodRx, you realize that doesn't count toward your deductible, right? It's not worth it for us to use GoodRx for that reason.
  23. That would be cool, but I suspect it won't happen this year. 🙂
  24. I am so sorry. I love to listen to Stuff You Missed in History Class. I hope they test you for common clotting disorders even if they think it's your meds.
  25. Have they expressed a need to follow up on this even if he responds to bodywork? Especially when you talk about him being long...I think connective tissue disorder. If they offer you a referral to a geneticist, I urge you to take them up on it.
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