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mamashark

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Posts posted by mamashark

  1. 9 hours ago, kbutton said:

    I tend to stay away from talks like that, but I am decidedly oversensitive on this topic-

    I can understand that. I honestly have listened to talks before that were mixed helpful and unhelpful and this one, at least this week's talks, are all unhelpful. They were so focused on kids who are behavior problems because they are bored in class and how we need to ask their teachers to test them out of parts of the curriculum and let them do projects in the back of the classroom.

    And I see ADHD or even straight up gifted with asynchronous development being the main "quirk" that seems to be the focus. Guess I just see my asd kids as quirky, so I thought there would be more substance to the talks.

    maybe for a lot of parents watching, it's eye-opening stuff, but I already opted out of the system that couldn't meet my kids needs. I am hoping the talks next week on executive function are more helpful, but I'm not gonna hold my breath.

    • Like 3
  2. I see your point. And yes, I love focusing on strengths, we often have discussions about what "our superpowers are" at the dinner table, since we all have areas we struggle and areas we excel. I suppose I was mistaking the point he was making to be only focusing on strengths and never work on deficits. If I had been able to see the entire interview maybe that would have been clearer.

    I agree, balance and moderation are important!

  3. The first video was on whether we should fix what's wrong or scale what's right with Jonathan Mooney who I don't know but he apparently wrote a book and is dyslexic. I'm kind of grumpy that you have to pay to watch the entire thing and it's honestly frustrating me because most of the conferences like this give you the whole interview but that's not the point of my post...he makes an interesting argument - a quote from his book was given: "I didn't have a disability, but experienced a disability in an environment that could not accommodate my differences" he then went on to say that "disability is a social construct" or something along those lines. His point was to get you thinking about what it means to thrive, and how to focus on strengths rather than weaknesses.

    I feel like a lot of our conversations on here are based on how to remediate weaknesses, and while yes, I see the argument for ADHD being more pertinent (let the kid move etc.), how does that fit into something like autism, when the social, language, fine motor, narrative (etc.) deficits really have an impact on a child and it's not simply "accommodating" for their sensory needs, or need to move, or what have you. 

    I feel like dyslexia, too, is something that while you can capitalize on strengths, you also have to focus on the disability and remediate it. Because reading is just that important in life. So while it may be a social construct, so is society and there's not actually that much wiggle room for differences and if we want our kids to hold jobs and be independent, we have to focus on the disabilities too? Am I missing the point somewhere?

  4. I've been watching mindwings webinars, and pondering how narrative language really fits into so much of life. A lot to digest, ponder, and figure out how to adjust.

    I'm also realizing how important self-regulation is to the process and putting that priority on top of our list each day. We've been working through the book Breathe Like A Bear by Kira Willey and everyone is loving it, especially when I bring my own interoceptive comments into the picture and make them all laugh! 

    I also love how my son was able to tell me today that he's not looking forward to grandparents coming this weekend "no! not this weekend! It's always crazy when Gramps comes!" with an alarmed look on his face. So we talked about ways we can have calm, and set up a quiet closet space in an off-limits room so he can be alone and quiet and calm whenever he wants. 

    • Like 2
  5. 48 minutes ago, Storygirl said:

    Perhaps she is having trouble with main idea versus details. When she is retelling a story, she seems to be presenting details without relating the main idea or the things that connect the details together, so that they makes sense. When she is relating a real-life problem, she is listing out all of the details about what happened, but not presenting the main idea or issue that actually needs attention.

    yes I can see how this makes sense. 

    • Like 3
  6. 1 minute ago, PeterPan said:

    If you're prioritizing which will be more pivotal, lowering anxiety or learning a new narrative stage, well... Kwim? It seems like her emotions, the need to self-regulate, etc. are actually more concerning here, in a way, than the exact contents of her narrative.

    That's exactly where we are - we are working through the interoceptive curriculum and actually it was for anxiety and self-regulation that we ended up at the right office to have someone see the autism and evaluate for it. So those are our priorities, for sure. I was just thinking about narrative language as I processed the strengths and weaknesses and realizing how much her speech (communication) is impacted by narration rather than necessarily a speech delay (which she didn't have as a child - although she lost language between 15-18 months... her first words disappeared and then she gained new language a few months later so no one took it seriously.)

    • Like 1
  7. 2 minutes ago, PeterPan said:

    Yes to all of those. She's clearly stressed, she probably has issues with cause/effect, is probably anxious about whether she's going to get in trouble, and probably does rehearse it in her mind. 

    On the plus side, ability to visualize is strong! Gives you something to work with. 

    The nice thing about the MW ASD kit for you is they're weaving in Social Thinking concepts. There's a lot of learning curve to this, so many things you're trying to learn here. But you know, buy a tool, take a step, buy another tool and take another step.

     

    Thanks, looks like that's a good next step for her. 

  8. 7 minutes ago, Lecka said:

    Mamashark -- I saw your post, I don't have anything really helpful to say.  I think for the stories she tells, using some kind of organizer (which, the Mindwings stuff is a kind of organizer) can help.  For the things with her sibling, she might be stressed and that can make it harder to know what to say.  

    Something to be aware of -- for how hard something is, it's usually harder to say something that wasn't seen, that was just talked about.  Being able to see something makes it more concrete.  And then the more recently something has happened, it will also be easier to remember and describe.  

    That could be a factor with her stories, if they are about something that happened longer ago.  

    But it's hard to say, kids are so different.  

    usually the narratives that are like scripts are when she expects to be in trouble. Anything else (even other what just happened or something I just read type stories) are disorganized. So emotion plays into it, but I wonder too, if she's maybe missing the connectors- cause and effect, or why she might be in trouble, and so she's replaying everything like a movie in her head. I do know that she is clueless when a sibling gets upset with her. She never knows why she upsets people and feels like a failure when as the oldest, she's the only one who can't "play right". So theory of the mind is a real weakness that we are trying to work on. 

    I suppose it's like her disorganized narratives are her trying to pick what we will want to hear, (an attempt at main points/organizing a narration?) and her scripted/over-detailed narratives are when she is upset, afraid, and wants us to have every single detail to know how to best handle the situation, rather than attempt to filter the important stuff and get that wrong.

    • Like 2
  9. May I jump in with a question? My 11 dd was just diagnosed with asd and it's making so many things click with her but I can't figure out where I am with narrative language. She has this mixed ability, and I need to think through what level she's realistically on, but when she's just telling us a story, it's usually confusing and requires multiple questions to get a sense of what she's talking about -- lots of disorganized language. But if she comes to us to explain why her younger brother is crying, she'll give us these painfully organized, detailed sentences telling us the specific action sequence as if she is repeating memorized scenes from a script, including all the characters, where they were, and who said what in what order, etc. We have to stop her and ask for a bottom line, just to know if the issue is pressing (he's hurt) and we need to go now, or if it's ok and he's just upset. So it seems like a really mixed level to me based on situation?

    • Like 1
  10. 2 minutes ago, PeterPan said:

    Did you say you're already running crazy with appts? I can't remember, sorry. I will say that one reason I like having my ds with a variety of people is it pushes him to generalize and use the skills in more situations. It shows us his holes. Sometimes it's waiting, self-advocacy, other kinds of skills, kwim? So you want to think through generalization when you're doing all this intervention yourself.

    yes, I have her in several things that she can use to generalize - she has 3-4 activities for herself each week depending on the week, where she has to work for another adult, and be around other kids of various ages, and with 4 kids total, I've got my schedule carefully handled so that everyone can maintain emotional regulation... including mom!! 🙂 

    • Like 1
  11. Just now, PeterPan said:

    I agree with you that access to services is the big goal. Is this the same person diagnosing both kids or different? Was one a pdoc and one a psych? Is this pdoc or whatever expecting more to show up? 

    The first was a psychologist - she screwed up the behavior assessment for my son and tried to get us to come for counseling for anxiety without reading all the paperwork she required us to fill out - we canceled our appointments when it became apparent that she wasn't willing to actually do as we asked and assess our son, and asked her to mail a report... 6 months later got the paperwork in the mail with asd diagnosis, lots of recommendations, but no level listed. I refused to go back to her, the whole thing was unprofessional and terribly handled.

    The second (current) is a psychiatric nurse practitioner. She is looking to treat ocd/anxiety (why we went to her) and wants to do that in order to rule out ADHD, since she said she technically qualifies for an ADHD diagnosis too. But after being in her office literally 15 minutes, I could tell her questions shifted suddenly to start addressing possible ASD. I was shocked at how quickly she picked up on that after numerous other professionals missed it.

    • Like 2
  12. 1 hour ago, PeterPan said:

    The reason you need full evals this time is because ASD2 needs services and probably means she also qualifies for county and state level disability funding, transition services, possibly social security/medicare waivers, all kinds of things. 

    My ds was high 1, pushing into 2, people would go back and forth, but at this point everyone agrees 2. It's a big deal. 1 is just really different.

    Yes, but my son is probably a level 2 also, and the psych report with the diagnosis (and no level listed) was enough (didn't need the full ados eval) for the insurance to cover all the speech, ot, and play therapy I asked for, including a few visits with a pediatric nutritionist. We also got medical assistance off of it... so the only thing I'd need a second opinion for is if this lady won't give me an actual report with diagnosis on it, which is what I'll need for medical assistance.

    Honestly, I have a lot more reading to do, but a social group might be the only service I look into at this point, we already have a lot of the other stuff covered (interoception, social thinking, academic modifications, sensory stuff) because I saw the deficits and started intervening before the diagnosis. 

     

  13. ok, thanks, so I need to keep focused on the fact that the diagnosis helps ME and it helps my daughter. whether others understand or care to understand is irrelevant. I'm honestly even wondering if I need to share this diagnosis with many people, including grandparents. It'll depend on the situation.

    I had to laugh, because part of the email was a note that she would need substantial support in the public school setting, and I was like, uh huh, why do you think I'm homeschooling her? She wouldn't last a week in the public school and I knew that from when she was in Kindergarten! Now I just have data to back my opinions up!

    • Like 3
  14. 1 hour ago, Lawyer&Mom said:

    As an Autistic adult, I firmly believe an Autism diagnosis is good news.  So, Congratulations!  I hope this diagnosis is a tool that open doors and provides insights to help you develop her strengths, support her weaknesses and ultimately deepen your relationship with your child.

    I agree with the comment above, I would wait to see what treatment plans she suggests before seeking a confirmation.  If she can give you good ideas and connections, you may already have what you need. 

     

    Honestly, I have to agree that it is good news. It explains some things and helps me know better how to focus on her weaknesses and how to capitalize on her strengths. It's a bit of a brain game to switch from treatment for my 6 year old son and my 11 year old daughter, who have essentially the same diagnosis/severity level, but present so differently. 

    Can you explain something to me though? The "early symptoms" of autism are SOOOOOO well advertised (toe walking, hand flapping, lack of eye contact, spinning the wheels on cars rather than playing with them, etc.) that I get a lot of confusion from family, and even some medical professionals who think, well gee, if it was missed as a toddler then it's not really autism. I can personally think back and see signs that I missed - the rigidity that prevented us from being able to walk around the block the "wrong way", the need to know the day's schedule every day, the hyperlexia, the terrible time potty training, the sleep issues, the lack of a "cuddly" baby who no one questioned because she just would rather be moving ALL. THE. TIME. BUT - she didn't LOOK autistic as a 2 year old. NOW, autism explains her social deficits, her rocking when upset, flapping when excited, severe sensory issues that had her diagnosed as ADHD at one point, etc.  So how do you answer those questions? When it didn't look autistic and probably wouldn't have been diagnosed at age 2 (and at age 6 was diagnosed as ADHD instead) but is being recognized now and people want to point to a "change" or "cause" that would have changed things, when really she just "grew into it", or as she matured, her delays became more apparent from my perspective?

  15. I emailed her back to see if she will give me a report. I didn't honestly expect her to email me results, we have a followup appointment with her in a couple weeks, I expected the info then.

    She said at the last appointment that she used to diagnosis asd all the time in Texas, but that some insurances where we are now don't like her to diagnose... but I already checked with our insurance and they said they would accept the diagnosis from her.

    • Like 2
  16. So the psychiatrist emailed me this morning. She said the Gars-3 results indicated that our daughter (who is 11 years old) "very likely has an autism diagnosis and that her autism is a level 2". 

    And then she recommended that we go to a major children's hospital near us to get a "confirmation" of the diagnosis. We got the same recommendation for our son, too, and never bothered because the insurance accepted the diagnosis as it was and covered the various therapies we asked for. (and realistically, every therapist took our word for the diagnosis and didn't even ask for the psychological report).

    I guess I'm not clear on what the benefit of having confirmation of the diagnosis is? 

    I'm feeling less shocked by this diagnosis compared to my sons, but still having that (however momentary) feeling of ok now what??? 

     

     

  17. yes I kind of filled it in by translating what they were asking for based on her behaviors... so questions that we could have interpreted more than one way went in the direction of "worse" rather than better. 

    I'd be surprised if in the end the results aren't clear. I'm just thrilled that someone finally brought it up, because we've had a run around of diagnosis (adhd, GAD, OCD...).  So I feel pretty good about getting clearer answers anyway. Her asd symptoms have gotten more obvious over the years to the point that it's pretty clear right now how different she is from her peers. So having that diagnosis will be pretty helpful I think. 

    • Like 4
  18. took my 11DD to a new psychiatrist recently and by the end of the appointment was convinced that we needed to look closer at a possible asd diagnosis and made a copy of a rating scale for me to fill out. It doesn't have the name on it, though so I'm not sure which one it is. she asked a ton of questions related to asd in the office too, while obviously filling out a checklist on her computer. 

    This says "section 5 Ratings" on the top and includes 58 total questions divided between restricted/repetitive behaviors, social interaction, social communication, emotional response, cognitive style, and maladaptive speech. with 0-1-2-3 as the options.

    She told me that she can score everything and if it's clear cut, can diagnose it herself, and if there are any questions, she'll help me know where to go for more testing. 

    what screening does this sound like?

  19. 6 hours ago, Lecka said:

    Really with copywork like she’s doing — there’s supposed to be a feedback loop where as she copies, she knows what she is copying, and with exposure, she does make connections, she does make those letter-sound connections, and other spelling connections, etc.  But that is assuming that there is a foundation laid in phonemic awareness and — probably — in having learned letter-sound associations when single letters were being learned.  

    So then copywork, outside the reading ability of the child, is pointless?

    For example - I have her copy 1 sentence in science - I read her the sentence, pointing to the words, because she may or may not know what they are, and then she copies the sentences fairly well, but I doubt she could read the sentence back to me. In her neuropsych testing, she scored really high on the test that she had to restrict her impulse to read the word (say the color of the word rather than the word that is written in whatever color it may be in) because, as the psych explained, she doesn't have to inhibit her reading instinct, because she just isn't reading it at all. 

    So I might be better off dropping the copywork, then, and working on explicit handwriting instruction at the level of her phonics skills/words she can read? 

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