My4arrows Posted February 6, 2021 Posted February 6, 2021 While we do not currently have any formal diagnosis for my 7 year old, we know there are learning problems there and are trying to help him learn better. Just a little background in case it is important. He was a late talker; began around age 3, but extremely regressed (ie only saying 1-2 word sentences at best and often needed curing) and still has problems which are being addressed in speech therapy. He also has handwriting issues (reversing letters), is unable to decode for reading, yet is excellent with math. I feel like the above issues I understand and can seek help with, but I'm not sure about his memory. He can recall quite a few events from long years past, but when it comes to working memory it is a struggle. For example, we will read a short story, 1 paragraph Aesop Fable, and then I'll guide him to answering questions to summarize the story. His answer to 90%+ of the questions is I forgot and he can't remember even after prodding questions. When we are working on memorizing Bible verses, he struggles and can't seem to get past the first couple of words. We are currently working through Barton Reading Level 1 and hew is stuck on the lesson with three sounds. He will forget one, switch the order of the sounds, or when we are replacing a sound he is jumbled up. So with all that said, I'd like to attempt to try some things to help him while we await the assessment process and getting in place with therapies which may help. Can someone point me in the correct direction? Quote
PeterPan Posted February 7, 2021 Posted February 7, 2021 So technically what you're describing here 5 hours ago, My4arrows said: we will read a short story, 1 paragraph Aesop Fable, and then I'll guide him to answering questions to summarize the story. that's narrative language. So you want an SLP to test narrative language. 5 hours ago, My4arrows said: When we are working on memorizing Bible verses, he struggles and can't seem to get past the first couple of words. This is called word or sentence repetition, and the length of repetition is considered a basic indicator of language development. In other words, he has an expressive language problem, probably more accurately a language delay. 5 hours ago, My4arrows said: but extremely regressed Did you ever wonder if this was autism? That would be the normal explanation. 5 hours ago, My4arrows said: We are currently working through Barton Reading Level 1 and hew is stuck on the lesson with three sounds. Does he currently pass the screener? 5 hours ago, My4arrows said: He will forget one, switch the order of the sounds, or when we are replacing a sound he is jumbled up. This can be a couple things. Sure he has possibly has low working memory. However it's much harder to hold things in memory when they're JIBBERISH to you. If I asked you to repeat a string of jibberish, you would have a much harder time than if I asked you to repeat something that had MEANING. When a dc is learning language whole to parts, they do not necessarily learn the parts of language well (phonemes, pitch, morphological chunks, and then bigger chunks like the functions of words, etc.). So saying sounds, if he processes in terms of whole language instead of parts, is speaking jibberish at him. We did LIPS, but we ended up going back even further with my ds and using this program with him. https://www.therapro.com/Differential-Processing-Training-Program-Acoustic-Tasks.html There are three books in the series. 5 hours ago, My4arrows said: is unable to decode for reading, yet is excellent with math. Then definitely do math!! The challenge with the reading, if you plow forward in the presence of a language issue, is that you can get reading without comprehension, =hyperlexia. That's what happened to my ds. There's a general book on hyperlexia that is sort of overview, but I found this one more practical https://www.amazon.com/Word-Callers-One-One-Research-Informed/dp/0325026939/ref=sr_1_1?crid=274E0Q95F2RCY&dchild=1&keywords=word+callers+by+kelly+cartwright&qid=1612666007&sprefix=word+callers%2Caps%2C175&sr=8-1 Be careful of books on amazon that tell you everything goes away. There's one written by a statistician, and he's so adamant. Unfortunately, our kids are not numbers and we don't GAMBLE with making sure our kids get what they need. 5 hours ago, My4arrows said: while we await the assessment process Are these going to be multifactored (team) evals for ASD? He needs SLP, OT and psych evals from what you're describing. 5 hours ago, My4arrows said: handwriting issues (reversing letters) midline immaturity issues. OT will be good for that. You can do BalavisX with him if you want. It's not too hard, if you have the time, and it's highly effective. Continue to do things that get him to orient in space. I built lego and Knex kits with my ds daily for a couple years, and during that time he transitioned from building everything in mirror to settling out. You're going to have more issues to be screened for (retained reflexes, visual motor integration, etc.). It's a long road. It's good that you're getting evals! If you want to work on the narrative language, the best stuff out there is from Mindwings/Story Grammar Marker. They have a TON of info on their blog and whole workshops, hours and hours of video on how to implement the methodologies, on their youtube channel. You don't have to spend a dime to get started. You're doing the right things, getting evals, asking how to do with him. I just know with my ds none of these have been super easy fixes. Sigh. 1 Quote
PeterPan Posted February 7, 2021 Posted February 7, 2021 (edited) If you just want to work on working memory, fine play games. Look at the types (auditory, verbal, kinesthetic, visual, etc.) and make up little games. It's just not going to change the other issues (narrative language deficits, language delays, auditory processing disorder, midline issues, etc.). But yes, absolutely any time you improve working memory you give him more RAM for his brain computer to work with. It's always good. With my ds I tended to use GAMES when working on it. So we'd play a game of Simon with him repeating the tasks and then doing them to find prizes. Or we'd do digit spans. Or we'd play Memory with cards. Or playing Simon where you tap the sequence of lights. There are lots of ways. But think about it. If you don't know Chinese or Russian and I say sentences to you in Chinese (which I don't know, haha) or Russian, how well will you do repeating them? It's not just working memory. The deficits/delays are making it harder. I had a long thread on language, but honestly you're going to wait on language interventions (therapy level) until he's had his baseline evals. They're something that distinguishes support levels, so you want those evals first. Are there things he enjoys, like cutting or mazes? What happens if you sign together? It's ok to focus on things that are going well and skip over things that aren't. For history, you could do PICTURE STUDY and drop the narrative approach for now. My ds has always eaten up picture study!! Your ds probably has language issues, so maybe try from some methodologies that are more visual and see if it lowers the stress. https://www.amazon.com/Can-You-Find-Too-Discover/dp/0810950464/ref=sr_1_1?dchild=1&keywords=can+you+find+it+too+metropolitan+museum+of+art&qid=1612666895&sr=8-1 Here's an example of a book my ds enjoyed at that age. There are several in the series, and they're WONDERFUL!! So you can still talk history but you're going more visual rather than so narrative. If there's significant effect on language, you might find he needs his instruction with more visual or else BRIEFer language. We did a lot with DK books, looking at the pictures and reading their captions. My ds was kind of funny btw, and yours might do this. When he was 5/6, he would listen to Great Courses, adult books, anything, and he basically just memorized them. Then, as we worked on language, he actually STOPPED listening to so much and pulled back! I think we shifted his internal standard, because he realized he didn't understand. So now I try to use briefer sources that I know he can understand more completely. So it's just something to think through in your instruction, how you can control the language for someone with a language disability. The engagement, joy of learning, something is important there. The narrative might not be the most important thing. I had basic goals of engagement, of him seeing the world was not always the same and that people lived different ways across time. Art could do that with less language. We STILL do this! I just started him on another beautiful history of the US in x number of paintings book. Edited February 7, 2021 by PeterPan Quote
PeterPan Posted February 7, 2021 Posted February 7, 2021 (edited) There are some therapy games, but where he's at with his language he's going to find them frustrating. You could do digit spans. I collect different kinds of Memory, so you can knock yourself out there. I've got this cute teepee memory I picked up at the thrift store, hehe. I'm always looking for stuff like that. Incredibles, How to Train Your Dragon, Suess. Memory comes in so many affordable versions. Would he like Catan Jr? He's a great age for it. Reality is you get working memory up and then you HOLD it by USING it. There's a Ticket to Ride Jr game too or a really brief T2R London. But start with the Jr versions probably, lol. How is he with metronome work? Can he clap to a beat? We did S'cool Moves and integrated metronome work, etc. into that. There's always tons you can do. But if you're saying what would make a difference, it would be -paring back the language so you use less but with more comprehension -going more visual -working on interoception=self awareness OTs are not necessarily trained on the interoception and it's LIFE ALTERING. And with the new Body Check Ring it can be done nonverbally. Huge huge, huge. Edited February 7, 2021 by PeterPan Quote
Terabith Posted February 7, 2021 Posted February 7, 2021 My youngest kid has major working memory issues. It's a big problem. She had no language issues, and her narrative comprehension was off the charts, which made things much easier, but for noncontextualized pieces of information (like sounds to blend, or phone numbers or even things like her age), her working memory for years was literally *1.* She's almost 16 now, and she is up to 3 now, which is enough to be functional, but for years, this was a major, life limiting problem. Honestly, I don't have any great advice. Games didn't work well for us, because she had too much anxiety. I think a chunk of that was just who she is, but I think part of it was that not having any working memory is stressful and anxiety producing. My kid had great phonemic awareness, so I never thought about dyslexia, but in practice, no working memory wound up creating dyslexia type issues with learning to read and spell, although she had such an uncanny ability to make meaning from very little context that it impaired her comprehension a lot less than I would have expected. We did a ton of phonics work, and she was reading above grade level by age 9. She worked through all of Wilson with a tutor (parts of it twice) later, but even after completing it, she spells around a second or third grade level. We did a ton of stuff with rhymes and songs and stories, because narrative memory was a strength, but honestly, I have loads of sympathy but not lots of advice. Quote
My4arrows Posted February 7, 2021 Author Posted February 7, 2021 (edited) 15 hours ago, PeterPan said: So technically what you're describing here that's narrative language. So you want an SLP to test narrative language. We are currently doing this both with speech in general, narrative language, expressive, etc. This is called word or sentence repetition, and the length of repetition is considered a basic indicator of language development. In other words, he has an expressive language problem, probably more accurately a language delay. Did you ever wonder if this was autism? That would be the normal explanation. Austism is not off the table as he does have an older brother on the spectrum. But I misspoke here. The language didn't regress. It was delayed. I'm feeling so overwhelemed that I didn't say that correctly. Does he currently pass the screener? He did pass the screening. He can do most of the things. I guess again I should have been more clear. It tends to be the blends, especially words ending in t. He struggles to clearly hear all those sounds. The more I think about it, I'm wondering about Auditory Processing issues as it would effect language development as well I suspect. And he'd struggle with the narrative considering he would need to properly hear and filter what he's hearing. I personally want to get him evaluated by an audiologist, but DH wants to take it one step at a time and begin with speech and the SLP agreed. I'm overwhelmed because my oldest has a number of dx just recently--mainly because of no one listening to me when he was younger and therefore I just began to believe I was making things up. Now we are knee deep in interventions needed for him and I want to be more proactive with this one before he's too much older. Are these going to be multifactored (team) evals for ASD? He needs SLP, OT and psych evals from what you're describing. He is currently beginning with SLP as well as genetics (as advised by some doctors we've seen). From there I'd also like to do neuropsych eval to give a clearer picture of where to go from there. I'm ready to jump in as I agree he will need OT as well as IMO Audiology. midline immaturity issues. OT will be good for that. You can do BalavisX with him if you want. It's not too hard, if you have the time, and it's highly effective. Continue to do things that get him to orient in space. I built lego and Knex kits with my ds daily for a couple years, and during that time he transitioned from building everything in mirror to settling out. For this we are currently doing some therapies which we were trained in for the brain. We have seen a HUGE improvement with these (beginning about two years ago) as well as diet and supplements. He was 5, still wetting the bed, still very low language and expressive language was very delayed. He's not caught up to the average 7 yo, BUT after we began this therapy others noticed the drastic change. You're going to have more issues to be screened for (retained reflexes, visual motor integration, etc.). It's a long road. It's good that you're getting evals! If you want to work on the narrative language, the best stuff out there is from Mindwings/Story Grammar Marker. They have a TON of info on their blog and whole workshops, hours and hours of video on how to implement the methodologies, on their youtube channel. You don't have to spend a dime to get started. I'll look into this for sure! Thanks for the recommendation! And yes, I know from the past failures with therapists with ODS, we need to be more diligent in screening and I need to be more firm since I do know him and I know that I'm not wrong. I'm trying to do as much as I can at home as we are rural and most therapists are over an hour away, most up to two hours. 15 hours ago, PeterPan said: There are some therapy games, but where he's at with his language he's going to find them frustrating. You could do digit spans. I collect different kinds of Memory, so you can knock yourself out there. I've got this cute teepee memory I picked up at the thrift store, hehe. I'm always looking for stuff like that. Incredibles, How to Train Your Dragon, Suess. Memory comes in so many affordable versions. Would he like Catan Jr? He's a great age for it. Reality is you get working memory up and then you HOLD it by USING it. There's a Ticket to Ride Jr game too or a really brief T2R London. But start with the Jr versions probably, lol. How is he with metronome work? Can he clap to a beat? We did S'cool Moves and integrated metronome work, etc. into that. So this is where he becomes a puzzle. He's great at this. He can clap out a beat to music no issue (even better than me lol). He excels at memory type games- the card game, the simon light up game, etc. And then along the lines of Catan and Ticket to Ride- He blows me away. We are a big gaming family. He has been playing the regular Catan since age 4 solo, even without reading. Same for Ticket to Ride and other games of that type. And he's good. Last night he was playing Dominion with his Dad and brothers and beat them all and we are competitive...no one let him win. He can tell me his strategy. But ask the kid my phone number, our address, to recall a Bible verse we've been working on for weeks, he draws a blank. So that's why as I think about it more, maybe Audio Processing? We also do a lot of read alouds of all levels. He has a great memory of the plot and sequence, but will forget character names. He can find the page they are first introduced, yet is clueless of their name. Same with friends names, although currently that's understandable as we haven't been consistently seeing people like in the past. There's always tons you can do. But if you're saying what would make a difference, it would be -paring back the language so you use less but with more comprehension -going more visual -working on interoception=self awareness OTs are not necessarily trained on the interoception and it's LIFE ALTERING. And with the new Body Check Ring it can be done nonverbally. Huge huge, huge. THIS! I wish I had known about this with ODS! I already talked to DH and I'm going to grab this. I'm fairly certain he needs this as well as ODS. I responded above in bold. There was so much to think about and so much good! THank you taking the time to reply. After years of being told that he's the fourth and it's "normal" I just want to scream. I'm just currently trying to take it all in and do my best to meet his needs. I think after making progress over the past two years and being at a stand still over the past six months has given me pause that perhaps I'm not doing enough or good enough. Edited February 7, 2021 by My4arrows Quote
PeterPan Posted February 7, 2021 Posted February 7, 2021 (edited) 1 hour ago, My4arrows said: The more I think about it, I'm wondering about Auditory Processing issues as it would effect language development as well I suspect. https://www.proedinc.com/Products/31050/differential-processing-training-program-3book-s.aspx?bCategory=OLA!LIST Here, does it make you feel better if I link it to you from a site marketing to SLPs? Your SLP probably already owns the TAPS. Not to contradictor your dh, but I think you would be wise at least to get a HEARING testing. Around here, I can get a basic audiology eval for my ds for FREE through some clinics and through the university. I would do that at least, because without that you can't say for certain that *hearing loss* is not the cause. It's one thing to say he has a language problem and work on how his brain processes bits of language. You don't need a fancy $800 APD eval for that and there's zero harm in waiting on that. But you DO want to know if there's hearing loss. So as a cover your butt, I would make sure his *hearing* has been checked. Just me, but just saying. It does happen and it's even syndromal in some types of ASD. You cannot really discretely separate APD from a language disability, because you're asking the audiologist (who is not a language specialist) to evaluate how he processes language. The SLPs are trying to take this turf back, and you can find cross-trained people even, SLP+Aud. But it doesn't matter, not really. The parameters shift after you intervene and it doesn't matter. The data didn't decide my intervention or drive my intervene. The major systems seem to say basically just do it all, do the whole workbook, do the whole progression. So that's why the hack answer is it doesn't matter. You can pick up that workbook series, start doing it with him (IT'S EASY), see what happens. YOU are available. YOU are paired with him. YOU can make it happen. And if he still has some issues later, when things calm down, no biggee do the full eval. But I just was singularly unimpressed. They draw a lot of vague conclusions from odd data, and all they're really saying is a dc with autism who has known language problems has language problems. It's really profound. I paid a stupid boatload of money for our evals, learned a ton, but I'm just it does not generate life altering data. You can buy a $30 workbook, try something, and as long as you screen for hearing loss, there's no harm. You can have your SLP run the TAPS, which is a test of auditory processing skills they may have lying around. 1 hour ago, My4arrows said: DH wants to take it one step at a time and begin with speech and the SLP agreed. Yup. And this is a language issue. You can only do so much. But honestly, that SLP can only do so much. How many hours a week does she have? Our SLPs have always fainted at the length of ds' IEP and the language goals. They can't get all that done in 45 minutes a week, kwim? So you can do it. You can work together as a team, letting your SLPs do the things they are trained on and know how to do and you doing the things they don't. No one SLP knows everything. I've used teams of SLPs, combinations, for 10+ years now with my ds, and that's what I've learned. Each one brings something, and I try to do what they DON'T know how to do and let them do what they DO know how to do, kwim? It never seems to work out well when I try to make an SLP do things that aren't feeling, aren't strong in, aren't comfortable in. Your ds will EAT UP every bit of language work you do with him. You could do 2-3 hours a day and he will probably eat it up. Don't feel like everything has to be done by the SLP. You can complement them and work together. 1 hour ago, My4arrows said: I'm trying to do as much as I can at home as we are rural and most therapists are over an hour away, most up to two hours. Oh my. Ok, so that's a good reason to search those two therapy sites (which are two of my FAVS) and see what calls to you. You can definitely do stuff yourself!! I would try to make a basic basic audiology eval, just to screen for hearing loss, happen. The SLP should have been screening for that, because there are usually patterns to which sounds and which frequencies and they can tell. But still, if you can get it done for free/low cost, it would be a thing to do. A full APD screening could wait till later if it's still an issue after you do intervention. That would give you paper trail for accommodations. My dd wears a filter from ABLE Kids and uses accommodations. 1 hour ago, My4arrows said: genetics (as advised by some doctors we've seen). If this is a developmental pediatrician, will they diagnose and get some doors to open locally? With what you're describing, he needs to be diagnosed with something. And once you get that diagnosis, that could get you funding (through your insurance, the county board of developmental disabilities, whatever) to make more services happen. He sounds like someone who would benefit from more services. Have you tried looking into TELE services? Some kids right now cannot sit for them, but my ds actually does pretty well. I think it would be worth looking into. I would take via Tele anything you could get. https://www.kelly-mahler.com/what-is-interoception/ This is something you can do with him and with your other kids. Try pairing it with the Body Check Ring https://www.kelly-mahler.com/product/body-check-ring/ 1 hour ago, My4arrows said: perhaps I'm not doing enough or good enough. I don't think that's it! I think you've been told to stop listening to your gut and that you're maybe someone who needs time to sort things out. It has taken me YEARS to sort things out, and you're doing it with child after child, all in a row. I agree this wishful "oh this kid has a diagnosis but that kid does not" does NOT HELP. He clearly has significant issues going on, even though with your supports he's continuing to grow relative to himself. So you're doing a good job!! What I've found with my ds is that with him the issues were finally so striking that we HAD to go back and research and learn these nuanced things that maybe would have helped my dd but weren't so glaring on her that we made them happen, kwim? So it's ok to say you're learning, you did the best you knew how, and we all keep learning. No guilt, just going forward every day the best we can. Edited February 7, 2021 by PeterPan Quote
PeterPan Posted February 7, 2021 Posted February 7, 2021 I'll just toss something about, but for me the hardest part was dealing with *myself* and my own emotions. Sure my ds is hard, but any weaknesses I showed, say because of undiagnosed or untreated anxiety, etc, were just like blood in the water for the SHARKS that are these professionals. It's so easy for them to blame, blameshift, on and on. So when I mention the Interoception and suggest you up prioritize it, it's because it has made a HUGE difference here. Now I also had had some trauma (which I didn't realize was considered trauma) and ended up needing trauma therapy too. But I'm saying that working on *yourself* by working on interception will help you help your kids and will make you less of a TARGET for the shark/professional attacks. You ARE good enough to do this and ARE the right one. It's ok to learn TOGETHER and grow together in this. 1 Quote
PeterPan Posted February 7, 2021 Posted February 7, 2021 1 hour ago, My4arrows said: be more diligent in screening and I need to be more firm since I do know him and I know that I'm not wrong. It's worse than that. You go to a professional assuming they own the tests and own the materials needed to do the intervention. Then it turns out they DON'T own the tests, DON'T own the materials, are NOT trained on the systems you need. But they still take your money, delay care, use up insurance coverage, etc.!!! The whole system is just so frustrating. And ASHA allows it to continue by forcing SLPs to have nominal training across many fields instead of in depth training in a narrower range. It means the stuff we're talking about is all stuff they have to learn LATER if they HAPPEN to realize it exists. So, so aggravating. What I've finally taken to doing? I literally find the test I want, call the SLP, and I say DO YOU OWN THIS? Quote
My4arrows Posted February 7, 2021 Author Posted February 7, 2021 (edited) @PeterPanThank you so much for your advice and encouragement! It's a lot to take in, but definitely something I'm ready to jump into. I'll definitely be talking to the SLP about the auditory program. We've just begun with them, but I'm so far pleasantly surprised. In the past it was send my child back into a room twice a week, told he did a good job and then see no progress. This time they want the parents present and actively involved in the sessions as well as showing us what to do the rest of the week. If they aren't going to be able to do the auditory part, I'm going to grab them myself along with the Interception material to get started with these things. Just a question about the Interception Materials. I know for certain my oldest has sensory processing issues and Interception would be helpful for him. My younger son, doesn't appear (I know that it may not be the case), but has emotional regulation issues. From what I read, Interception helps with that as well? I was just looking at the the bundle she has for the curriculum and it appears to cater to the sensory aspects such as feeling sweat or hot and cold. I know he doesn't have issues with that type of thing. Edited February 7, 2021 by My4arrows 1 Quote
PeterPan Posted February 7, 2021 Posted February 7, 2021 1 hour ago, My4arrows said: Just a question about the Interception Materials. I know for certain my oldest has sensory processing issues and Interception would be helpful for him. My younger son, doesn't appear (I know that it may not be the case), but has emotional regulation issues. From what I read, Interception helps with that as well? Yes! And the challenge is that *communication* makes everything harder for him. So he might not be aware and would have difficulty communicating even what he could to try to self advocate. What effectively happened with my ds was people (OTs, etc.) would teach him tons of emotion words and it would make NO DIFFERENCE. Now we work on self awareness and use communication charts (like the Body Check Ring) and he can say for himself what he feels and needs. Everyone is going to have an opinion on what you should be doing right now, and everyone is going to tell you how their specialty will solve all your problems. No one person will solve everything and no one person gets enough time with him to do that anyway. So you build a team and let each person do what they can, what they know how to do. 1 hour ago, My4arrows said: I was just looking at the the bundle she has for the curriculum and it appears to cater to the sensory aspects such as feeling sweat or hot and cold. I know he doesn't have issues with that type of thing. Is he by chance hyper responsive? My dd is like this. Like with her, everything is a LEVEL 9, CALL THE POLICE, HUGE DEAL, kwim? So her brother would hit her (in a way that to him felt like nothing) and she was SCREAMING! And people don't immediately think over-registry needs interoception work, but it still does. They need to have words for what they're feeling, and they need to get it identified BEFORE it gets overwhelmingly big so they can problem solve. So my dd would come out and just pace and rant about how she was so hungry, but she couldn't tell me what she wanted to eat! She couldn't tell me BEFORE it got too big. So it doesn't have to be under-registering sensory. It can be over registering. Zones of Regulation (or a simpler problem like ALERT/How Does Your Engine Run) is what they typically teach for self-regulation. It assumes the dc can, with a prompt, feel his body, recognize his affective and hypostatic (mood and body) feelings and use those to categorize them as good to go (green), sluggish and needing to up (blue), beginning to lose control (yellow) or out of control (red). Red can be happy and is not necessarily bad/angry/unhappy. You can be so elated you lose your self control and are not in control. My ds does this!! So you can learn about the Zones and see if an approach like that will help. I had multiple OTs use it with him and we just weren't getting breakthroughs. He didn't have the self awareness to get there, kwim? But some kids do! Part of interoception is making things explicit and improving communication. Then they learn how to make "happy menus" where they are saying what makes them feel GOOD and doing things proactively to feel GOOD. It's a really good place to be in when you've got a dc struggling to communicate or self regulate. When you can flip it to how can we stay feeling good, that's a really good mindset! What kind of things help most with your ds' dysregulation? What do you think would help him stay more regulated? I'm just curious. For my ds it has been partly chemistry, partly needing very clear structure, partly that he doesn't handle things that are abrupt and needs lots of predictability. I really hate the whole BLAME MOM thing, because for us chemistry was definitely a part. There's this tendency to say you can ABA out this stuff, and my ds just has really hard chemistry. So be kind to yourself, take your time. What you don't do now can be done later. There's this idea (in books like the Pivotal Response Therapy book) where you're asking WHAT WOULD MAKE A DIFFERENCE? It's kind of interesting to think about, and I think you're in the position to know that. Lots of things can be done and probably will be done eventually, but if you can only pick 2 things to work on now and really do them (which is basically what your dh is saying), what will MAKE A DIFFERENCE? Quote
My4arrows Posted February 10, 2021 Author Posted February 10, 2021 On 2/7/2021 at 5:49 PM, PeterPan said: What kind of things help most with your ds' dysregulation? What do you think would help him stay more regulated? I'm just curious. For my ds it has been partly chemistry, partly needing very clear structure, partly that he doesn't handle things that are abrupt and needs lots of predictability. I really hate the whole BLAME MOM thing, because for us chemistry was definitely a part. There's this tendency to say you can ABA out this stuff, and my ds just has really hard chemistry. Oh, this is so tough since he can be quite unpredictable. Happy go lucky one moment and then all out tantrum the next! So part of it is his brain chemistry and regulating that the best we can through nutrients and exercise. Still there are moments we don't expect. But for him what I can control would definitely be structure. We've been working off of a schedule which he helps to choose each day and he is eating it up. He gets a bit of the control he desires and a structure whereas I can help him along the way. He also needs planning along with the structure. He needs to plan out what to do rather than being thrown into anything including playing. It can be so frustrating for me as I as think how easy playing can be, but for him it still needs that clear structure and plan. That's the main thing. Some sensory input helps, but its not his main need. Quote
kbutton Posted February 10, 2021 Posted February 10, 2021 On 2/7/2021 at 1:15 PM, My4arrows said: He struggles to clearly hear all those sounds. The more I think about it, I'm wondering about Auditory Processing issues as it would effect language development as well I suspect. One of my kids had APD and has had remediation. It's been fantastic and a huge improvement. On 2/7/2021 at 3:02 PM, PeterPan said: You cannot really discretely separate APD from a language disability, because you're asking the audiologist (who is not a language specialist) to evaluate how he processes language. The SLPs are trying to take this turf back, and you can find cross-trained people even, SLP+Aud. But it doesn't matter, not really. The parameters shift after you intervene and it doesn't matter. It does matter--whether it's an SLP or an audiologist, someone has to pinpoint and remediate the issue. No SLP cared a whit about my son's auditory processing or had a way to remediate it. Use whatever professional in your area can pinpoint and actually provide intervention. You can find a professional here: https://www.igaps.org/ On 2/7/2021 at 3:02 PM, PeterPan said: You can have your SLP run the TAPS, which is a test of auditory processing skills they may have lying around. TAPS is auditory WORKING MEMORY. Not auditory processing. Just FYI. On 2/7/2021 at 3:02 PM, PeterPan said: My dd wears a filter from ABLE Kids I don't know the why of how this works for PeterPan's DD, but these aren't evidence-based. I get the general impression that they work by suppressing processing in one ear to maybe make the brain use the other side? Don't know for sure. Our audiologist explained that some language tasks are bottom up and some are top down, and that is why some tasks seem to fall into what audiologists are willing to do and some fall into what SLPs are willing to do. If someone wants to cross-train, fine. Both professions tend to belong under the same tent with ASHA and sometimes iGaps; it's important to see if remediation is possible, and if so, to try to do that. 1 Quote
PeterPan Posted February 10, 2021 Posted February 10, 2021 1 hour ago, kbutton said: TAPS is auditory WORKING MEMORY. Not auditory processing. Just FYI. https://www.schoolhealth.com/taps-4-test-of-auditory-processing-skills-fourth-edition Quote
PeterPan Posted February 10, 2021 Posted February 10, 2021 2 hours ago, My4arrows said: Happy go lucky one moment and then all out tantrum the next! https://www.amazon.com/Stop-That-Seemingly-Senseless-Behavior/dp/1890627763/ref=sr_1_1?crid=2EX9ZDUW21W5X&dchild=1&keywords=stop+that+seemingly+senseless+behavior&qid=1612998466&sprefix=stop+that+seeming%2Caps%2C168&sr=8-1 https://www.kelly-mahler.com/what-is-interoception/ https://zonesofregulation.com/index.html Quote
kbutton Posted February 10, 2021 Posted February 10, 2021 4 minutes ago, PeterPan said: https://www.schoolhealth.com/taps-4-test-of-auditory-processing-skills-fourth-edition Is this an update? I was thoroughly unimpressed with the version my son had. Quote
My4arrows Posted February 11, 2021 Author Posted February 11, 2021 2 hours ago, PeterPan said: https://www.amazon.com/Stop-That-Seemingly-Senseless-Behavior/dp/1890627763/ref=sr_1_1?crid=2EX9ZDUW21W5X&dchild=1&keywords=stop+that+seemingly+senseless+behavior&qid=1612998466&sprefix=stop+that+seeming%2Caps%2C168&sr=8-1 https://www.kelly-mahler.com/what-is-interoception/ https://zonesofregulation.com/index.html Yep, grabbing the Interception stuff. We've tried the Zones of REgulation with our family before but it wasn't working. I think they need more before getting to that step, hence grabbing the interception. 1 Quote
PeterPan Posted February 11, 2021 Posted February 11, 2021 59 minutes ago, My4arrows said: Yep, grabbing the Interception stuff. We've tried the Zones of REgulation with our family before but it wasn't working. I think they need more before getting to that step, hence grabbing the interception. Yup. That first book I linked is very *brief* and inexpensive as an ebook. You can throw it on, read, and begin implementing tomorrow. Fwiw, my ds is in that complex pain in the butt camp, and it hasn't worked out well here to hope it would go away with behavior strategies. There are supplements and then there's like really stepping it up with genetics to target. But frankly, if the psych we talked with had given us a scrip for what I wanted (we have hoops to jump through), we'd have done it. Instead we're still in our awkward mix of supplements (driven by genetics, maybe 80% successful) and a low powered prescription. I got so much pushback from so many people, and reality is only *I* pay for what isn't getting treated completely. If you're the one teaching him, you're the one paying the price. And if it's driven by his chemistry, he probably won't be able to get it under control no matter how many great strategies you employ. It's sort of the lie of ABA. Like ABA is great, but the lie is that everything would be better if you could just xyz better. Sometimes everything is better when someone finally listens and gives you a strong enough med. The chemistry in place lets them finally use the good instruction they're given. I'm even being told some of these atypical antipsychotics will tone down sensory, I dno't know. My ds spent the whole day wanting to arm wrestle and sensory seeking. It gets so old. There isn't enough sensory input on the planet to make him feel better, because it's a chemistry problem, not some mysterious "sensory" problem. I'm ranting. I'm just saying don't believe their glib promises. The more complex the kid, the more likely you have a complex solution. Quote
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