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    Joined: Apr 2010
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    Originally Posted by master of none
    But Dee Dee, what if the "club" is a job and no jobs want you due to your disability? What if it's school and school is compulsory? When you have choice, it's great to use that choice if you want to, but it also allows organizations that do not want to deal with disabilities to continue to discriminate.

    I'm not saying we all must bust down the boundaries, but there have been many who have sacrificed to do just that so that we may have a choice of places that will take our kids with disabilities.

    Absolutely-- I'm not saying I enjoy discrimination. I worry a great deal about how on earth DS will make it through a job interview.

    Something like 13% of adults with autism have non-sheltered jobs. It's a very low number.

    I'm just saying that right now, we are being selective about environments and still protecting DS from those where we think he won't be successful due to others' biases. I imagine that our college search and his eventual job search will have some of that flavor. Sad that it still must be this way.

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    Last edited by Sweetie; 01/09/14 08:59 AM.

    ...reading is pleasure, not just something teachers make you do in school.~B. Cleary
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    For us, it wasn't an issue of getting a diagnosis/label, or not. He was ALREADY BEING LABELED. Kids with issues get judged and shamed and labeled things like "unruly" "violent" "anger issues" "behavioral problems" "stupid" etc, etc, etc. Having a proper diagnosis allowed people to see my son in a different light.


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    Hey moomin, I'm so glad things have improved for your DD!

    You can count me in as someone who has concerns about diagnoses and feels it is a confusing area. Not for all children, but for some. Mind you, we were the ones considering if DD9 had ASD in some form, and had professionals tell us no, but I feel we could easily have had someone else tell us yes, because she was very gray area. These days, she really does not look ASD. Similarly, we had one teacher voice concerns about attention, others insist vehemently that they see zero attention issues, another say "There's something, but I don't know what," (this teacher also said "Oh no, not ASD" when we asked if she thought it might be ASD) another say "I think her giftedness is causing behavioral problems," and a young preschool aide accused us of ignoring that she was autistic. She at one point received a depression and anxiety diagnosis, but was borderline on those measures as well. She was tested for auditory processing problems and aced the tests, and also aced an attentional screener on the computer. She also has some new concerns popping up that I can only describe as Differences That Could be Pathologized But Also Maybe Not.

    At this point, I feel that any one label would be wrong for DD, but that she is neurologically interesting and extremely sensitive and high strung. Socially and academically, she is having no problems right now. At home, things have improved quite a bit since we put her on rhodiola. She has also seemed to mature somewhat. It could be a lull. We have those here. I fully expect further surprises, but I have kind of given up on finding out the One Thing that is up with her. We will cope with issues as they come up.

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    I didn't mean to offend. I think I would be diagnosed with something if I went to school now. And I really do think if someone had said "you are hopeless at ball sports because you have no 3 D vision" or "your inability to predict when people are going to lose their temper id due to the fact you can't interpret facial expressions very well" or actually you can't help not fitting in because of whatever reason it would have been comforting. It would have meant that it wasn't because I was an unworthy person etc or just didn't try hard enough at sport or whatever. In fact when someone suggested I had ASD it was really comforting.

    When I got Ds6s test results it was a relief.

    Society is more tolerant of most things but there are, here at least fewer work opportunities for the non cookie cutter employee.

    The thing I was trying to say with asthma and things like autism is that as a severe asthmatic I tend to think that people who grew out of it were misdiagnosed.

    Last edited by puffin; 01/09/14 09:23 PM.
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    ElizabethN, just wanted to send you positive thoughts for tomorrow's meeting.

    If I were in your shoes, I would pursue an evaluation by a private SLP. It's great that the school is providing the services your DS needs but he could benefit from additional therapies and if your insurance would pay for that, I'd prefer to have that option than not:

    http://www.asha.org/PRPSpecificTopic.aspx?folderid=8589934980§ion=Roles_and_Responsibilities

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    My dr explained to me that my son had an area of his lung when he was small damaged by pneumonia His dx after that was RAD (reactive airway disorder) and not full blown asthma. But he has outgrown it because he has added lung mass as he has grown so the section of lung that was say 50% of his lung when he was four is now only (making these percentages up) 5% of his lungs now as a teen.

    Does that make his history of asthmatic cough or wheezing any less real? It wasn't as classic a case of asthma as I have heard of and not as hard to manage. But it did exist and wasn't misdiagnosed. I sure am glad to have the nebulizer years behind us.

    Sorry your asthma has been so hard on you...I can see where you would feel asthma...you don't know what real asthma is, you had a walk in the park compared to real asthma.


    ...reading is pleasure, not just something teachers make you do in school.~B. Cleary
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    ElizabethN, I don't have any personal experience with Seattle Children's, but they have two free events this month, Autism 101 & 201. The events may provide an opportunity to meet staff and network with other parents, so you'll have a better feel if SCH is the right facility for you.

    http://theautismblog.seattlechildrens.org/classes-and-events/

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    Originally Posted by Sweetie
    My dr explained to me that my son had an area of his lung when he was small damaged by pneumonia His dx after that was RAD (reactive airway disorder) and not full blown asthma. But he has outgrown it because he has added lung mass as he has grown so the section of lung that was say 50% of his lung when he was four is now only (making these percentages up) 5% of his lungs now as a teen.

    Does that make his history of asthmatic cough or wheezing any less real? It wasn't as classic a case of asthma as I have heard of and not as hard to manage. But it did exist and wasn't misdiagnosed. I sure am glad to have the nebulizer years behind us.

    Sorry your asthma has been so hard on you...I can see where you would feel asthma...you don't know what real asthma is, you had a walk in the park compared to real asthma.

    I am glad your child is better too. And aware of how stupid it is.

    What I was trying (badly) to say is that you treat what you have. And sometimes you don't know whether the problem goes away because of the treatment or because it wasn't what you thought it was. But you still have to treat it - you can't wait. And knowing what you are dealing with is always better though not always easier.

    And now I am going to stop digging my hole before it gets too deep to climb out of and wish the OP all the best.

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    Originally Posted by blackcat
    Are teachers telling the class that student X has ADHD and student Y has autism? I find that rather disturbing.

    blackcat, I just wanted to clarify that my children's teachers have *not* told their students that certain students have ADHD or autism or other disabilities - my kids know about other student's challenges because either the kids themselves have told their peers or because a parent and/or the child has talked to the class as a whole about it (typically at the beginning of the school year - and this happened more often in elementary school - in middle school the kids tend to handle telling peers on their own). Not all the kids at their school who have challenges tell others - my dysgraphic ds, for instance, as far as I know, has told absolutely *none* of his peers ever. It's something I honestly wish he would do because I think he'd find acceptance. It's pretty obvious he has a challenge with handwriting both because he uses keyboarding for almost all of his classwork and from seeing what his handwriting samples look like compared to other kids in his class.

    As a parent, I know of quite a few kids challenges simply because parents talk to each other - not gossip as in "did you know Suzy's dd is allergic to shellfish" but because parents of the kids with the challenges have told me about it for whatever reason. I happen to know another mom of a dysgraphic student in my ds' class simply because the mom mentioned something about it casually when several of us class mom's were having coffee. This is the first person in "real life" (ie not online) outside of my family that I've known who has a ds with dysgraphia - I'm glad she mentioned it. I occasionally will mention my ds' dysgraphia in conversation with other school parents, and found another mom of a younger student who also has dysgraphia. I wasn't looking for that type of connection in either case - but I am so glad I found the first mom, and the second mom was so glad she found me.

    Re playdates, very few parents I know would specifically exclude a child from playing at their house because they have ADHD or are on the autism spectrum. The way we decide who is invited for playdates at our house is... our kids decide who they want to invite and they are invited. We've had on occasion children over who were annoying in terms of behavior... but they weren't kids with ADHD or autism or any specific kind of challenge - they were just kids who were not well-behaved kids. I'll be honest, I do not get excited about inviting those kids back, and neither do my kids... but fwiw... I haven't seen any correlation between kids who are not fun to have over on playdates and kids with autism/ADHD.

    Quote
    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".

    My kids' disabilities and 504/IEPs etc have *never* been announced to the class by a teacher, and neither have other students. From what I've seen the school staff does everything they can to prevent that info from becoming public knowledge - to the extent that when I've volunteered in a coaching position at one school I was not told which kids had 504 plans and I technically violated one simply because I didn't know it existed. I think it's important to realize though that fellow students can figure out for the most part which peers are receiving extra help (either push-in or pull-out) and which kids get accommodations in the classroom and on testing. My ds worried about this a ton when he first was given accommodations - he was so scared of having other kids see him as "different". But the thing was - it really isn't a big deal to the other kids in class. It took him literally months to get up the courage to take his laptop to school and use it in 4th grade... he was so worried about what all the other kids would say and what they would think and that they would think he was "wierd" because he was doing his schoolwork differently. When he finally opened it up in class the first time, maybe one or two students stopped by his desk to see what was up and said "cool!" and that was it.

    I don't intend to sound pollyana about the reality of people with disabilities facing discrimination and misunderstanding from others - the only point I was trying to make was that in my observations of the school environment my kids have been in - most students have been very accepting of other student's challenges and disabilities when they knew about them. When students were exhibiting behavioral or other challenges and their peers weren't aware the student had a disability... those students seem to have more difficulty fitting in and being included.

    polarbear

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