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    #179011 - 01/08/14 04:48 PM Re: Here we go again [Re: ElizabethN]
    blackcat Offline
    Member

    Registered: 05/23/13
    Posts: 2154
    You can also look up "apraxia of speech" because some kids with apraxia don't have the motor issues, but if he didn't have any major speech delays, that probably isn't an issue. Sounds like it could be a fluency disorder though, more in line with stuttering. Whereas my DS has articulation problems and speaks slowly but doesn't stutter. Both are fluency problems.

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    #179012 - 01/08/14 05:30 PM Re: Here we go again [Re: ElizabethN]
    geofizz Offline
    Member

    Registered: 12/06/10
    Posts: 658
    Originally Posted By: ElizabethN

    His teacher has him in a much lower reading group than we expected, mostly because he can't seem to retell a story that he just read. But the SLP discovered that he can't retell a story that he just heard any better, so the problem doesn't really necessarily seem to be reading comprehension.


    This, plus what TomN contributed, sounds similar to my DS8. He was diagnosed last summer with oral apraxia as well as social communication disorder. We see the issue of story retelling in spades, despite the fact that he clearly comprehends what he hears and reads. (He will, for instance, act out a story as I read it) We also have issues with very slow response times, even when I can see on his face that he's formed an answer (e.g., "do you want chocolate or eggplant for dessert?" takes several seconds for him to spit out that he wants chocolate even though I can see him looking at the chocolate, for instance). Asking him what he did at school almost feels like a cruelty. He cannot answer it without about a minute of thought. Journal writing was also painful. He can write just fine, but a free form "put down some thoughts" was impossible.

    DS also shows signs of the oral apraxia through inability to say complex words, particularly with multiple syllables formed in the same part of the mouth, as well as significant oral motor issues related to eating. It was hard to get the diagnosis, and harder to find a SLP with the right skill set to treat it. The one we have has done an excellent job on some of the issues, and has been unable to touch others.

    I discovered last year that DS could retell a story 5-10 minutes after reading or hearing it, but not immediately after. We describe things as taking the scenic route through his brain. I'm not sure the speech therapy has helped on this point much (I asked her today to revisit this issue), but it did help to script him on what "retelling" means. I gave him a sequence of questions to answer, which helps by reducing the number of options of what to describe, but also seems to help in scripting the order of how to respond. We practiced for a month - first with written questions to read and answer after a 5 minute break, then fading the script and reducing the "rest" time.

    We did go get another evaluation (on the school's request, we've done 3 autism evaluations, negative each time), and the above diagnoses came from a hospital team evaluation that constituted the child's 6th speech evaluation. We also ended up with an ADHD diagnosis. I know last year's teacher agrees, but no one, including this year's teacher, the principal, or us as parents agree (and when I finally got the report, all the surveys and rating scales). However, since we have some sequencing problems, boredom, and basic young wiggly kid issues, we have established a series of accommodations that fit the kid and got DS a 504. The 504 game him things like supervision during lunch time so he doesn't choke. Overall, I don't care if the ADHD is right or not, it is getting him what he needs.

    No idea if you're dealing with any of the same issues, but hope something in here helps.


    Edited by geofizz (01/08/14 05:37 PM)

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    #179014 - 01/08/14 05:39 PM Re: Here we go again [Re: ElizabethN]
    DeeDee Offline
    Member

    Registered: 04/16/10
    Posts: 2498
    Originally Posted By: TomN

    he will start with a couple of words, pause, repeat them, again, and again, and then get more of his sentence out.


    We have one like that at our house. I think there are multiple possible causes for this kind of verbal dysfluency, including but not limited to attention, motor issues, and sequencing issues.

    (For that matter, there are multiple possible causes for retelling issues as well. Both my kids have that problem but, I think, for different reasons.)

    Originally Posted By: geofizz

    Overall, I don't care if the ADHD is right or not, it is getting him what he needs.


    This has been our family's position on diagnoses. They are absolutely obligatory both in the school and medical systems IF you need certain kinds of help. If the kid needs help, the label can often make that help available. In our case, I would rather have the help because the needs are real. If help is offered for the wrong need, we negotiate and investigate and try to get the whole team clear on what we see.

    I do not share others' fear of labels-- a disability label is better than the label of "slow" or "stupid" for a child who operates at an unusual pace, or "bad" for a child with behavioral issues. Outliers are going to be labeled-- better IMO to have the correct name for what's going on and some control over the message.

    DeeDee

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    #179015 - 01/08/14 05:46 PM Re: Here we go again [Re: blackcat]
    DeeDee Offline
    Member

    Registered: 04/16/10
    Posts: 2498
    Originally Posted By: blackcat

    Except that there are quite a few people in the autism community who resent it being called a disability or disorder or something that needs to be helped or changed (at least the very mild forms of it.) http://en.wikipedia.org/wiki/Neurodiversity


    Helped can be very different from changed. Sometimes social acceptance means recognizing that some people need more help than others, and I think most neurodiversity advocates acknowledge that having help available when needed lets some people live more independent lives.

    Originally Posted By: blackcat
    I struggle with this even in terms of DS's DCD. Does it really matter if he's uncoordinated as long as he can function? Is it really to his benefit to make him go to physical therapy/occupational therapy to "fix" him? At what point do you let it go and just let the person be? What if he doesn't care if he can ever do jumping jacks? We make him learn it anyway? No easy answers. He's in PT and OT so obviously right now I'm taking the route of "intervention" and trying to do what I can, but is it really reasonable? Who knows.


    We have struggled a great deal with this. DS11 has worked out his own opinion, which is very like Robison's referred to in the link above-- basically that if the issue is holding you back from doing things that would be good for you or things you want to do, it's a disability. If not, it's a difference. I see it as a bit more complex than that (since I'm the one who has to decide how to spend limited resources) but I'm not opposed to the distinction in principle, and I find it useful.

    We try to respect DS's unusual qualities as long as they're not harming his present or future getting along in the world, and we work very hard on changing those behaviors that will get him fired from a job or prevent his having close relationships.

    YMMV.

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    #179016 - 01/08/14 06:06 PM Re: Here we go again [Re: ElizabethN]
    DeeDee Offline
    Member

    Registered: 04/16/10
    Posts: 2498
    Originally Posted By: ElizabethN
    I'm finding the current direction of the thread very interesting, though.


    Glad you didn't feel thread-jacked. Feel free to take the topic back to what's actually useful for you.....

    DeeDee

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    #179019 - 01/08/14 07:37 PM Re: Here we go again [Re: DeeDee]
    Irena Offline
    Member

    Registered: 05/26/12
    Posts: 1724
    I do not share others' fear of labels-- a disability label is better than the label of "slow" or "stupid" for a child who operates at an unusual pace, or "bad" for a child with behavioral issues. Outliers are going to be labeled-- better IMO to have the correct name for what's going on and some control over the message.

    DeeDee [/quote]
    This is true and worth remembering for sure! Thanks for the reminder.

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    #179025 - 01/08/14 10:46 PM Re: Here we go again [Re: DeeDee]
    polarbear Offline
    Member

    Registered: 09/29/11
    Posts: 3363
    Originally Posted By: DeeDee

    I do not share others' fear of labels-- a disability label is better than the label of "slow" or "stupid" for a child who operates at an unusual pace, or "bad" for a child with behavioral issues. Outliers are going to be labeled-- better IMO to have the correct name for what's going on and some control over the message.


    I agree. I also think it's helped my kids (as human beings) to know other kids who come "with labels". My kids have been in class and at camp with kids with ADHD, autism, dyslexia. My dysgraphic ds has a classmate this year who is also dysgraphic. I'm sure there are other kids with diagnoses that haven't been shared, but everything I've seen re the kids & families who are open about and share their diagnosis with the other kids - I truly believe it's helped give my children a good perspective on how we are all different as human beings and how that's ok. It seems (jmo) that the kids who have the diagnoses and who share them (just in the school situations we've been in) are kids who are included as part of the classroom "whole". The kids who do *not* have a diagnosis that is known to the other students in class stand out more because their peers don't have a context to put their differences into. Sorry I'm not explaining any of this very well. Basically, when my kids are in a class with a student who has autism or adhd or whatever, it's like just a part of who that kid is, akin to being in class with a kid who has red or brown hair - it's seen as part of who they are and everyone is different and that's ok.

    polarbear

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    #179032 - 01/09/14 05:56 AM Re: Here we go again [Re: ElizabethN]
    blackcat Offline
    Member

    Registered: 05/23/13
    Posts: 2154
    Are teachers telling the class that student X has ADHD and student Y has autism? I find that rather disturbing. If my DD ends up with a 504 plan for ADHD that should be something that's kept between us and the teachers, not announced to the class with the kids being aware of the "label".

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    #179036 - 01/09/14 06:31 AM Re: Here we go again [Re: ElizabethN]
    Sweetie Offline
    Member

    Registered: 06/05/11
    Posts: 669
    My teacher husband had a student in high school who had Asperger's and could get upset enough to throw chairs. At the beginning of each semester the parent (with the child's knowledge although he would go to the library) would come in and give a talk about autism in general and how the class was all in this together and tolerance and his specific challenges and the strategies he and the teachers were going to use. She also gave the talk to the football team (he was a team manager). The football coach emphasized how he was a full team member and how he expected them to behave. The young man was also know to walk up to people and introduce himself...hi my name is and I have autism...so his dx wasn't really a secret.

    By the end of four years, there was very little chair throwing.

    This was the student and parent's choice. But you know even if they never disclosed his actual dx the teacher would have had to address the chair throwing and how not to set him off and student safety once chairs were flying...so you could talk around it "everyone has his or her challenges" or you can, with permission of course, give the challenge a name. I think the biggest factor really is school climate.

    You see those videos where the middle school or high school kids give the child with disabilities the chance to make a basket or touchdown. There was one middle school one and the kids worked up this plan all on their own and didn't tell the adults. The boy running the ball stopped purposely on the one foot line and then they called a play that they had made up where the young learning disabled boy was given the ball to run in and they surrounded him to protect him. But the interviews of the kids was the kicker...the kids got it...they got inclusion, friendship, putting others first, working around challenges, everything. Some of the organizers got it when they were hatching the plan. Another kid who was in tears during his interview only got it after he participated in the plan. He admitted to the whole thing changing him.


    Edited by Sweetie (01/09/14 06:35 AM)
    _________________________
    ...reading is pleasure, not just something teachers make you do in school.~B. Cleary

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    #179037 - 01/09/14 06:33 AM Re: Here we go again [Re: ElizabethN]
    Irena Offline
    Member

    Registered: 05/26/12
    Posts: 1724
    I'd like to add while I do not "fear" an accurate label, I think the point some of us are making is that we fear is an inaccurate label. I know some feel and have experiences that any label accurate or not is helpful but some of us are very wary of that. I know I am very concerned about inaccurate labeling.

    And yeah no teacher at our school is ever permitted to announce a students dx - tho one teacher at my sons clarified with the other students whether or not my son had a disability ...


    Edited by Irena (01/09/14 06:35 AM)

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