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I'm seething right now, and was going to write a long angry diary about how wronged I am by the world and aren't I oppressed by the system and boo-hoo, poor me.

Instead, I will posit a question, in the hopes of generating a discussion.  I truly welcome your opinion.

Sometimes, I get too worked up about things and think that I and only I am right about certain issues.  I was recently "talked down off a ledge" by a high school guidance counselor (Thank Goodness for good counselors) about my son's performance at school and I realized after reflection that I had kind of gone off the rails.

Now I'm pondering if I am perhaps doing it again with a different child.  So, without further ado...

Special needs children are as unique as all children, except more so.

I believe that children with autism are especially unique, because their disorder manifests itself in so many ways.

Imagine there is a child who might not be developmentally ready to, for instance, tell time due to a confusion of the nature of time.

That same child, especially an autistic one, might be a genius at geometry or algebra or calculus or physics.  Who knows?

However, in the field of special needs education, their goal is to prepare these children to enter the workforce.  Time and money skills are heavily practiced.  Over and over again, every day.  For years.

What happens if a child is not developmentally ready for time skills?  Or perhaps, just really doesn't care?  Should we force that child to have time skills as a goal on an IEP from age three until age eighteen?  Please keep in mind that IEP goals are limited, so having that goal for their whole educational career means something else is not attempted, or learned.

It leads to a real conundrum.  We must prepare them for the workforce (even if we strongly suspect that barring a miracle they will never enter the workforce) at the expense of developing other talents or interests?  Or should we focus on probing what the child's strengths are, and trying to develop them so that this particular child might have a fulfilling life?  Some Special Needs children grow up and work at the grocery store as baggers, and I know there are some who truly love their job and independence.  But what about the child who doesn't want that, who would be terrible at it or hate it?

What do we do with those children?  Should we force them to learn a skill (telling time) that they don't get and hate at the expense of all else?

I think it's pretty obvious from the way I'm framing the question how I feel about the matter.

What do you think?

Originally posted to coquiero on Thu May 03, 2012 at 07:15 AM PDT.

Also republished by Parenting on the Autism Spectrum and KosAbility.

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Comment Preferences

  •  I think your conundrum extends to all kids (14+ / 0-)

    The way education has focused on a few easily standardized tested skills while cutting out music, art, history, science, literature etc. It forces kids to learn one way only and stresses everyone out.

    It's frustrating, having parented a kid with his own special needs, to face the same level of stress every year after he made HUGE progress on really important skills but his teacher won't stop stressing over something that he'll almost certainly grow into in a couple years. You never get to have a victory,  you're always a couple steps behind where you're "supposed to be"

  •  Education (10+ / 0-)

    The word derives from the latin meaning "to draw out", not to pump in.

    The purpose of education should be to aid the child to fulfill their full potential without any preconceived limits. Now that should be the same whether the limits of their ability is to become a Nobel Laureate or to lift a spoon of food to their mouth.

    As background, I am a governor (member of the school board in US terms) of a primary school in inner London. We are in the process of negotiating setting up a special unit for children with Autism Spectrum Disorder (ASD) and already have several pupils who are on the spectrum, whether fully diagnosed or not.

    Pupils here must, by law, have individual teaching plans if they are assessed as having Special Educational Needs. Indeed every child should have the speed and level of teaching individually tailored for their abilities.  

    If your child is not getting that level of professional care from her teachers; kick, scream, demand, complain and do whatever you can to ensure she is properly educated, not forcefed the skills the system has decided they need for the job they have decided is all they are suitable for.

    Fight poverty, oppression, hunger, ignorance, disease and aggression wherever they occur.

    by Lib Dem FoP on Thu May 03, 2012 at 07:52:57 AM PDT

  •  And we must be realistic about how to do it. (8+ / 0-)

    My daughter is just now entering this field and I often get to "debrief" her as she tries to cope with the stress and strain.

    Two things are quite obvious to me, the first being that surely it is evidence of a civilization of the highest order that tries to integrate all its citizens into the social society, and the second being that the manpower and money needed to actually do that requires a very careful stewardship of our common money (I'm looking at you Excessive Military and Draconian Drug Laws, GTFO). And we are not yet doing that successfully.

    The third thing (NETSI) is that the commercialization of our education system has nothing to do with providing education at a reasonable cost and everything with investors looking for opportunities to make increased profit by charging more and spending less.  

  •  Aspie dad here, and I feel your pain. (10+ / 0-)

    Not just AS, but other psych issues piled on to our son, tragically.

    Our biggest worry when the issues became really evident (2nd grade) was what becomes of kids like him? What will their lives be like? Will they be able to have even a moderately independent life once their parents are no longer able to fight the battles on their behalf?

    Other issues like bullying, humiliation in class, etc., can also play a large role in their development, along with hyper-reactivity that many on the autism spectrum exhibit, and which can cause real problems.

    I don't envy you the journey you must make on your child's behalf. It's not a battle anyone would volunteer to fight for their kid, given a choice. But it's the path we have to walk.

    The best advice I have, FWIW, is to love her (as you obviously do) and argue against including in the IEP items that you don't want to be in it. IEP's are supposed to be arrived at by consensus, so if there's a real point of disagreement, oppose including it. Take a step back, a deep breath, and be as calm as possible when you argue your points.

    Then offer the help at home she needs to develop whatever awareness or skill set you think is most important.

    We had a behavioral analysis specialist help with getting our son on task for lots of daily routines, and it was a real help.

    All the best of luck in what is always a very protracted, uphill battle

    Fear is the mind-killer - Frank Herbert, Dune

    by p gorden lippy on Thu May 03, 2012 at 08:00:02 AM PDT

  •  Your child is not a cog in the economic wheel. (7+ / 0-)

    He can have a digital calendar accommodation for the rest of his / her life if needed, but I doubt that it will be needed. There will be a time when time can be introduced successfully.

    In the meantime, I assume that your concern for your child is his / her ability to self-direct their own self-care, happiness and creativity, or something like it. Time does not have to be an essential element of that, not now, maybe never.

    Be clear with the team what your goals are. Your goals are what carry the legal weight. CDC classes frequently prioritize bizarrely, but their priorities are not a commandment from God. They can get the fuck over it.

    Additionally, if they have any training, education or license to be educating a child with autism then he/she should be using a picture schedule (or if older, a word schedule).  Put times on this schedule. There. Time.

    This is your child, and legally your IEP.  Be clear what your goals and priorities are and go kick some ass.

    "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

    by Unduna on Thu May 03, 2012 at 08:04:29 AM PDT

    •  Thanks, Unduna (7+ / 0-)

      I would like to kick some ass, super-hero style, but I'm trying so hard to restrain myself, be professional, be polite, do things incrementally, etc.  All the while smiling and wanting to throttle everyone around the table.

      I feel like most of this year has been wasted as I have bit by bit, backed this teacher in a corner of her own making and I've now "given her enough rope to hang herself".

      Our next IEP meeting is not going to be very pleasant.  The hard fact is that there are teachers and bad, and we've had our share of both.

      But this one is bad, and she's got my daughter for three years.  I'm trying hard to work with her, and I've made some real progress, but I feel bitter.  It's not my effing job to teach her how to do her job properly!

      Such is life, I guess.

      I blog about my daughter with autism at her website

      by coquiero on Thu May 03, 2012 at 08:14:35 AM PDT

      [ Parent ]

      •  Boy do I ever understand. (7+ / 0-)

        I taught CDC for years. Parents loved me, administration, not so much.

        I am now on the other side of the table, working ferociously for one student with a severe language disorder.
        She is included for half a day, I work with her one on one for the rest of the day.

        We have found "incremental" to be a very mixed bag.

        If by incremental, you mean following a step-wise approach, absolutely. Do that.

        If by incremental, you mean taking time and being patient, you will regret it more than you can presently imagine.

        Keep that smile plastered on your face, be polite as hell up until when you can't be, and yes that happens and lasts about five minutes, be outrageously frank and fed-up, then go back to being polite but firm, and make these people feel your presence.

        Document document document.
        Keep a journal of all you do and what happens to you.
        When you think about a phone call, make it an e-mail.
        Tape record IEP meetings.
        Keep copies of above.

        You can call IEPs whenever you like. Do it. Make your presence a constant aberration until you get what you need for your child.

        And when they break federal law, when they fail to follow the IEP,  throw the book at them.  
        And yes- it is them. She is their responsibility - if she is failing to follow the IEP, that is an administrative problem. When you take that to them and they don't fix it and you file a formal complaint, the state then becomes an issue.
        They will do ( or bloody well should do) anything to keep a formal complaint from being filed because that brings the state's attn to them, which is ghastly.

        Call a meeting, follow procedure, file the formal complaint against the teacher, then the school, then the special ed supervisor if needed - loose the sleep - it will pay off.

        I have now been on both sides of the table. Do not be patient. Follow the steps, be polite as often as you can, but do not have patience with crap. As with any and all interventions, time is of the essence, here.

        And yeah, you have to tell this teacher how to do her job. Sucks.

        "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

        by Unduna on Thu May 03, 2012 at 08:40:48 AM PDT

        [ Parent ]

    •  And if your child does not have a picture/ word (6+ / 0-)

      schedule, please let me know so I (please, please, please!!) can help you get this going. It is critical and saves a lifetime's worth of distress and effort.

      "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

      by Unduna on Thu May 03, 2012 at 08:16:01 AM PDT

      [ Parent ]

  •  His Smile is All I Need (9+ / 0-)

    I have given up on IEPs, parent-teacher sessions, team-approach positive feed back therapy, lectures, and sermons. As the parent of a child with special needs (according to the educational system), I have struggled for almost a decade to work within the system: "he will never read on grade level"; "even simple math is beyond his abilities"; "socialization is the most important skill he can acquire at this time," etc. He has had wonderful teachers and horrible teachers and has--in my view--struggled equally with both.

    I have given up on special classes, individualized attention, high-priced tutors, simple and complex immersion techniques, Hill School play approach, Montessori methods, and a number of pedagogical approaches I can't even remember.

    What I haven't given up on is my son. He was born with cerebral palsy and agenesis of the corpus callosum and is--without a doubt--one of the nicest, most perceptive, kindest, infuriatingly hard headed kids you will ever meet. And I love him just the way he is; I wouldn't change a thing.

    My entire approach to his formal education changed during an interim IEP meeting when he was about halfway through the first grade. The specialist and his teacher wanted to set a goal dealing with his being able to recognize his letters 70% of the time (or thereabouts). I almost came unhinged, but calmly replied that he should be able to meet that considering he had been reading for almost a year. They balked. They snickered. They exchanged knowing glances. I refused to continue with the meeting unless they included my son, whom they brought from class. I had him sit next to me (he was extremely shy at that point in his life) and help me--by reading to me from a book I pulled from the shelf in the office. He did pretty good for a kid the school claimed couldn't recognize the alphabet. I loved him for overcoming his nervousness and I was proud of him for, well, just being him.

    So now, my guiding aim for his education revolves around a series of simple questions: what skills will equip him with what he needs to be happy, to adore beauty, to appreciate art and culture, to empathize with those less fortunate than he, to logically state his position, support his wants, to understand the value of earning a reward, to never allow himself to feel disadvantaged for any reason, and to deeply and honestly understand love.

    I still participate in the meetings, conferences, and new methods; but my approach has been son-focused and not education-focused. We take road trips (rock and roll hall of fame, for instance), argue about music, read aloud to each other often, and cook together. I help him with his homework but now never allow it to overflow his frustration level. I know now he has so many challenges in front of him that learning how to tell time can wait. Literally.

    Good luck. I believe that my child told me what he needed once I learned to listen to him in a trusting, innocent way.

    •  Yay you. I think I love you. (5+ / 0-)

      And fyi - I have yet to meet a child with CP who wasn't smart as hell.  I know they are out there, but it is not my experience.

      What measures school system personnel have a tendency to use to assume intelligence or the lack there-of is so fundamentally flawed as to make it the true dysfunction requiring the term "disordered."

      The stories I could tell from my life as a teacher about smacking a child's intelligence into the face of idiot special ed personnel -  I could write a frackin book.

      Anyway, good on ya, god luvya, and onward ho.

      "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

      by Unduna on Thu May 03, 2012 at 08:50:17 AM PDT

      [ Parent ]

    •  I'm so with you on the therapies (4+ / 0-)
      Recommended by:
      Unduna, P Carey, weck, worldlotus

      I'm not wasting any more of her time with therapies that focus on BS that doesn't address who she is as a human being.

      She has autism.  All the speech therapy in the world isn't going to overcome that.  She isn't going to suddenly start speaking because she's been in therapy.

      She communicates in her own way.  We need to develop that, and work with it, not try and force her to fit into an ideal that we think she "must" have in order to "participate in society".

      And ABA (I realize you're probably not dealing with ABA, but I'm sure you have your own hate list of therapies) is bull**.  They talk about it like it's some magic bullet, but it doesn't work for everyone.  Some kids are smart enough to recognize what they're looking for and give it to them.  Doesn't mean they're learning anything.

      And YES, YES, YES, let's take our kids to museums, travel around the country and show them new things, experience beauty, listen to music.

      I blog about my daughter with autism at her website

      by coquiero on Thu May 03, 2012 at 08:59:00 AM PDT

      [ Parent ]

      •  Children with autism respond beautifully to sign (7+ / 0-)

        language - it is visual, and that gets them. Auditory is so NOT their strong suit - auditory can actually drive them nuts after a bit.

        Tell a child with autism that it is time to sit down for dinner and you could be repeating yourself for a while, sign it and the independent response is astounding.

        Using sign was a breakthrough for me, why it is not a hell of a lot more common astounds me.

        There are lots of little things that make massive differences with these guys, but making basically everything visual is key. And using visuals for transitions can change her life entirely.

        Sorry I won't shut up, here , I just really give a damn about this - and reading acquisition - notice much? :-)

        "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

        by Unduna on Thu May 03, 2012 at 09:14:24 AM PDT

        [ Parent ]

        •  Second that (5+ / 0-)
          Recommended by:
          Unduna, weck, worldlotus, second alto, koosah

          You're a marvel, Unduna.

          The world needs more of you!

          By the way, I've now got the Asst. Principal going in to observe math class next week.

          Let's hope some resolution comes out of it.

          I blog about my daughter with autism at her website

          by coquiero on Thu May 03, 2012 at 09:24:03 AM PDT

          [ Parent ]

          •  YAY!!! And thank you, I actually need to share (6+ / 0-)

            stuff, it feels so urgent to me...

            If you want some really simple approaches to start using at home and, after getting your own experience and her comfort levels established, putting into her IEP, please please please feel free to contact me.

            If I could just win the lottery and  travel the country helping parents with sign language and picture schedules, I would be a very happy woman!

            Oh - and here's a weird little thing that you won't hear anyone talking about but that I ran into by accident but then started to have some very interesting success with - if she has eye-contact problems, try using a mirror.
            For some odd reason,  making contact via the mirror seems to reduce the intensity and allows them to hold the gaze and register the connection.  It can make you cry, it can be such a relief and such a delight. I usually keep it a very quiet experience, but it can be built on for trust and connection.
            May not work for you, but  - Strategically place a mirror in a play area, let them get used to it, after a week or so catch a quiet, easy moment and attempt the eye-contact.  
            Keep trying. I've had lovies who have eventually gotten so used to it that they would take me by the hand and lead me to the mirror. So Lovely, so welcome.

            "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

            by Unduna on Thu May 03, 2012 at 09:38:31 AM PDT

            [ Parent ]

            •  We taught eye contact with sign language (5+ / 0-)
              Recommended by:
              Unduna, weck, coquiero, worldlotus, second alto

              and repetition when he was very young, before his diagnosis. We used the "look at me" (two fingers in a V pulled towards the eyes) both verbally and in sign every time we talked to him. We also used an 'ear pull' to show he was listening. It took years, but slowly he would hold that eye contact for longer. Now at 16 he'll make eye contact with strangers. He won't always hold it, but it's there initially, and he will hold eye contact with people he knows.
              I never thought of mirrors though!

              "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

              by FloridaSNMOM on Thu May 03, 2012 at 10:42:18 AM PDT

              [ Parent ]

              •  Me either - it just happened! (6+ / 0-)

                It started with a little guy who liked looking at himself in the mirror, and just spread from there.

                So much of what these guys taught me about working with them can be traced back to odd little moments of just being present, you know?

                And yes, I used the V finger technique to catch the eyes of those I wanted to show this technique to - very helpful reminder, thanks!!

                And as much as sharing eye contact this way was a teaching tool because success without stress is always a teaching tool, I mostly used it for connection, trust, and as an opportunity to send the love light to them with my eyes. And the humour light, they dig the humour light. Twinkle eyes just tickles them.

                I had one little fella who started taking me to the mirror and then he would just play with his objects du jour in front of the mirror, like he had learned that he wanted to seen and watched and the mirror became some kind of access point for that.

                I think it reduces the sensory intensity. Not sure, exactly, but I think that that is it. They experience so much sensory intensity, anything that helps buffer that intensity creates openings for both relief for them and an heightened ability for them to allow the external world into their worlds. I also used ear plugs (that sure takes practice and exposure! ear mufflers look funny but are easier to get them to use) and polarized sunglasses (they take to those pretty dern fast - polarized sunglasses are a real winner - show me a child with autism who isn't squinting at the world - they are rare).

                "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

                by Unduna on Thu May 03, 2012 at 11:07:35 AM PDT

                [ Parent ]

                •  The mark of a GREAT educator (3+ / 0-)
                  Recommended by:
                  FloridaSNMOM, worldlotus, second alto

                  You got to know your student, you watched them, you adjusted your technique based on what you saw.

                  You are learning from them, which is the way it should be.

                  A great teacher for kids with autism should have an enduring curiosity to find out what makes these kids tick, a sense of playfulness and humor, and flexibility of mind and spirit.

                  I'm mulling your sign language suggestion.  I must say it's the one thing we haven't tried, but my daughter's problem is at heart a communication one, not a language one.

                  In my opinion, she decided long ago that she has psychic communication skills and we're all just idiots for not being able to receive her messages.  She stands there and looks at you like you're soft for not getting what she wants, even though she hasn't said a word to you.

                  If she's going to communicate, she'll talk, but the bottom line is she does not want to communicate.  She does the bare minimum despite every intervention and technique known to mankind.

                  With the exception of sign language. ;)

                  I wish you knew her, and could see her look (in response to, for example, "where are you going?") that says, "Look you dumb fuck, is it not blatantly obvious that I need to go get some scissors?  Do I need to spell it out for you?"

                  It's hilarious.

                  I blog about my daughter with autism at her website

                  by coquiero on Thu May 03, 2012 at 11:42:03 AM PDT

                  [ Parent ]

                  •  I know that look, and I know the type. (3+ / 0-)
                    Recommended by:
                    coquiero, worldlotus, second alto

                    I love them both!

                    She sounds content, contained, satisfied and motivated in her own world.

                    I would LOVE to meet her, see what her language processing is, and what her sensory processing is.  This can vary so dramatically across the spectrum, as does freakin everything.

                    My experience is that what is sometimes considered language/communication can have sensory elements.

                    Noise, you know, very unpleasant and all.... 'bothersome, annoying noise!
                    Don't want to deal with it, don't want to make it, either. Hah. So there.'

                    I hear you saying that language is less the issue - she hears you and responds to what is being said without difficulty.  That is wonderful, a huge in.

                    The thing about sign language is that it is quiet, unobtrusive, respectful of the contained life. Information input without sensory aggravation.  Moving the day along - family teamwork - requires info, especially if transitions are hard.

                    The least obtrusive communication measures become the most efficient measures. She can process the visual very rapidly - it is a strength, generally - so there is a huge reduction in aversion, aka, "tuning out."

                    Then compliance (hate the word, but it does have its place) becomes easier, expectations for her cooperation (critical) become possible without being demands, and the day gets easier for everybody.

                    Additionally, sign is easier for the quiet ones - especially when stressed. Signing "STOP!" is usually the first time they use it. If she's not much of a talker, which sounds like an issue, signing mine, go, thirsty, ow (always a good one to have), find it, help, sit, need to pee, want it, book, puzzle, please and thank you etc. may come easier to her than making noise. And she begins to express her needs and to interact in some back and forth - we want this.

                    Trying it would be key, obviously.  Most signs are very simple and intuitive. Figuring out which ones you want to start with means just watching your day and looking for what you most frequently need to get across to her or need her to get across to you.  You also want to figure out what part of the day is most stressful to y'all.  Those two thing are the places to start the hunt for which 3-4 words you want to try.  Get everybody in on it, sibling suggestions are usually gold.

                    Then just one sign per request, activity, complaint is what you want. Simple, fast, easy for everybody to learn.  Then model.  When you say the word, sign it (reducing how many verbal words you use might be key, sometimes too - simplify).  Is it time for dinner? Say, "dinnertime", sign, "eat."  At the table, teach it: "when we are ready to eat, we will use this sign."  

                    After a few goes of explicitly teaching the word (keep it simple) and saying and signing, drop saying it. Just sign.

                    She certainly won't mind, I can tell you that. What is of interest is, will she start to do it herself?

                    So, when you are choosing words, go for function, but mix your function with her function. Definitely teach her some that you regularly need - family teamwork is critical, you need her to cooperate easily and with minimal invasion - but be sure to teach her some signs for her favorite things or things you imagine she would love to put on you.  "Stop" is, as I said, a winner, but do choose some words for her favorite activity, complaint, request or item. Be inventive, but you know her quirky irritations and favorite past times.  Give her something she can't resist.

                    And keep the teaching simple. With a book, just hand her the book and sign "book". For verbs, you will have to match it to an action. No pressure, make it kind of incidental, a btw sort of feel to it. Hey, fyi...  she'll get it but not resist.

                    Give it a go. My favorite sign book is Signing Fun by Penny Warner  You aren't trying to teach her full ASL for life, you are just opening a pathway for cooperation, information, interaction and the basic joy of expressing a desire or complaint and getting a positive response.  

                    This is just a gateway, but it could lead to a big world.

                    I would love to know if you do try it, how it works for you. If you hit a weird bump, I would be delighted to be another mind to help you think a way through it.

                    Anyway. My 2 cents!

                    "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

                    by Unduna on Thu May 03, 2012 at 12:54:32 PM PDT

                    [ Parent ]

                    •  Since she's twelve, two word signs will end (3+ / 0-)
                      Recommended by:
                      coquiero, worldlotus, second alto

                      up being what you want - verb-noun stuff, and politeness stuff, too

                      Work up, but experiment

                      "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

                      by Unduna on Thu May 03, 2012 at 01:03:55 PM PDT

                      [ Parent ]

                      •  Would you recommend a different book (1+ / 0-)
                        Recommended by:
                        second alto

                        since we're talking about a 12 year old?  The book you linked to is a Nook book, which would be cool, but if you think something better would work for an older kid, I'd be interested.

                        My fault about assumptions.  I may be a bit like Ellie after all, in that I assume that everyone knows what I'm talking about without my having to say it.  :)

                        I blog about my daughter with autism at her website

                        by coquiero on Thu May 03, 2012 at 01:13:44 PM PDT

                        [ Parent ]

                        •  No problem! - and sorry I linked to a nook book (2+ / 0-)
                          Recommended by:
                          coquiero, second alto

                          my link says 'paperback'?

                          I would still recommend this book, I think, just because the vocabulary is child and teen oriented.
                          The other thing I like besides the vocabulary is that this book does a nice job of showing how to make the signs - we (my student and I) prefer it for both of those reasons.

                          I know Amazon sells the paperback version, see what you can find, and, obviously, read others reviews and see if something might suit you better!

                          Fyi, you can also find video online of how to sign a word, too, sometimes - but we care less about perfection and more about use!! And we have our own funny shorthand, sometimes, too, we cheat a little to make it simple sometimes...

                          "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

                          by Unduna on Thu May 03, 2012 at 01:21:49 PM PDT

                          [ Parent ]

                          •  You didn't link to a Nook book, my bad (3+ / 0-)
                            Recommended by:
                            Unduna, FloridaSNMOM, second alto

                            I found that it was offered also as a Nook book, which is good for us.  We're a Nook family...

                            I'm going to get it, and I just sent an email to her worthless speech therapist and even more worthless teacher about sign language, because

                            we must be cooperative, mustn't we??

                            I blog about my daughter with autism at her website

                            by coquiero on Thu May 03, 2012 at 01:27:21 PM PDT

                            [ Parent ]

                    •  (I was imagining a six year old, not sure why, (2+ / 0-)
                      Recommended by:
                      coquiero, worldlotus

                      so you can definitely increase the talking about teaching of sign and how you teach it, and cooperation is probably not much of an issue now - she's on her way to be grown, so adjust my suggestions accordingly, sorry for my assumptions!)

                      "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

                      by Unduna on Thu May 03, 2012 at 01:07:00 PM PDT

                      [ Parent ]

                •  Ear plugs and sunglasses (4+ / 0-)
                  Recommended by:
                  coquiero, Unduna, worldlotus, second alto

                  My son uses these as well, especially around florescent lights, which he says make him angry. We tried ear muffs and head phones, but they get so hot down here, especially in the summer, so he switched to plugs even if they were harder to get used to. On the bright side, getting used to ear plugs has helped with his hair washing issues, the water on his ears doesn't seem to bother him as much.

                  "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

                  by FloridaSNMOM on Thu May 03, 2012 at 12:22:41 PM PDT

                  [ Parent ]

                  •  ear plugs (4+ / 0-)

                    She won't keep them in!!  They would solve SO many problems, particularly with bathing, since right now she will only do it will her hands firmly planted over her ears (doesn't like the sound of the water).

                    So for now, I'm still bathing my 12 year old.  :(

                    I think part of it is she likes the foamy material of the plugs, so she takes them out to squish them and play with them.

                    We make do with noise-cancelling headphones outside of the house, they really do the trick.

                    She won't use sunglasses, either, but I haven't found that light bothers her as much as other things.

                    I blog about my daughter with autism at her website

                    by coquiero on Thu May 03, 2012 at 12:27:21 PM PDT

                    [ Parent ]

                    •  Try giving her an extra earplug (4+ / 0-)
                      Recommended by:
                      coquiero, Unduna, worldlotus, second alto

                      or two to play with and see if that helps with her taking them out of her ears.
                      And I understand about bathing the 12 year old. My son's issue lately is, he'll take two baths a day but won't use soap. So, I made him scrub the black ring out of the tub, and explained to him that he wouldn't have to do that as often if he used soap (He's studying chemistry so we used that as an experiment) because soap helps the body oil wash down the drain rather than float on top and stick to the sides when he lets the water out.
                      Pointing out that he smells better with soap than without wasn't working, but this has so far (knocks on wood). But on the bright side I think that's more an age typical thing than an autistic thing.

                      "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

                      by FloridaSNMOM on Thu May 03, 2012 at 12:36:44 PM PDT

                      [ Parent ]

                  •  Hairwashing and ear plugs!!! Brilliant!!! (4+ / 0-)

                    Love love love this. Just for regular kiddos, love this!

                    "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

                    by Unduna on Thu May 03, 2012 at 12:59:28 PM PDT

                    [ Parent ]

            •  YES to mirrors & not just for kiddos with ASD! (3+ / 0-)
              Recommended by:
              coquiero, Unduna, second alto

              Mirrors can be utilyzed in every aspect of teaching/learning skill acquisition & across all environs & abilities (with the exception of 100% blindness)

              My class population ran the gamut of disability, severity & ages.  I had ballet mirrors on the walls, bathroom door mirror & portable mirrors for floor time & table time.

              I used the similar for home schooling/therapy) visits as well as in my own home when I became mommy.

              Proved to speed up skill understandings & acquisition-from learning to walk to speech formation or sign language to toilet training to self feeding-like I said across all developmental areas.  I still use mirrors as needed & my child will be 17 soon.

  •  The education lawyer who went with me to a few (6+ / 0-)

    IEP meetings was expensive, but for the rest of public schooling, the district was respectful and supportive.  My child wore honor cords at graduation.

    That being said, all students should receive instruction in things that interest them,  That is why college becomes a slice of heaven.  And forcing a student to endlessly repeat work on a concept that eludes them make kids hate school and dread that instructional time.  Acting out is a big clue, so is lying about the work.

      I know that spending time with a math teacher, daily after school for six months got me to pass algebra with a minimum grade of 65, but we both hated it so much that I am still complaining about it and he left teaching. I didn't  learn algebra until I was in my thirty's and had to teach it to students. I learned it slowly, and taught it the same way, and that worked out ok for them.  I am a wiz at geometry and accounting, but some things are too frustrating to keep on doing.

     One student with an IEP told me that her Sped teacher wouldn't let her learn anything else until she mastered fractions; day after day for two years, do you know those fractions yet? Then she came (angry) to my GED class. When she had mastered everything else she needed to pass her GED, she  became motivated by the fractions, leading to the algebra and passing the exam.

     The kids know when they are ready to work on their most difficult areas, and they will let the teacher know! In the mean time, let us work on something completely different and interesting! We can catch up on the other stuff later.

    If love could have saved you, you would have lived forever.

    by weck on Thu May 03, 2012 at 08:53:16 AM PDT

    •  Having to explain that success is what motivates (5+ / 0-)

      to teachers is such a bizarre thing to have to do, but yeah, it has to be done.

      In the last diary on reading, I talked about the distinction between the adreneline / cortisol approach vs. the endorphin approach - this applies everywhere.

      Everyone has to experience success to learn and keep learning. When success is happening , you can slide in frustrating subjects and get something done.

      Pounding on frustration with more frustration is both fruitless and cruel and it can become trauma.

      "In all chaos there is a cosmos, in all disorder, a secret order." Carl Jung

      by Unduna on Thu May 03, 2012 at 08:59:21 AM PDT

      [ Parent ]

      •  Motivation (5+ / 0-)
        Recommended by:
        Unduna, weck, coquiero, worldlotus, second alto

        Indeed but I would add that many special needs teachers are very highly motivated - they have to be to survive.  I used to have work that involved visiting schools. In some special schools, the children have such profound problems that quite literally the staff celebrate the first time they can lift food to their own mouth after years at the school. They carry on despite knowing that some are unlikely to survive to the formal leaving age.

        In another case, it took real talent and great dedication to recognize and nurture the quite extraordinary drawing talent of Stephen Wiltshire. Surely an example for school administrations that believe teaching a young person to bag groceries is sufficient.

        Fight poverty, oppression, hunger, ignorance, disease and aggression wherever they occur.

        by Lib Dem FoP on Thu May 03, 2012 at 10:02:47 AM PDT

        [ Parent ]

  •  There should come a point (5+ / 0-)
    Recommended by:
    Unduna, weck, coquiero, worldlotus, second alto

    when someone comes up with adaptive strategies to cope with deficits, such as time.  Only a few years ago, this might have been difficult, but with the rapid advances in technology, I can easily imagine an app that alerts a kid to when he/she is supposed to be somewhere or do something.  

    We wouldn't expect a hearing impaired person to become a virtuoso violinist or a violinist to be a bricklayer.  Why isn't there more imagination in education?  As a retired teacher, I can posit a few theories.  The most obvious is the emphasis/influence of federal funding for education.  That's how we got NCLB and it's progeny.  The push for accountability, especially via test scores, has blunted or extinguished any glimmer of creativity from teaching.

    There are also just some teachers who are more attuned to alternative ways of seeing and educating those who march to a different drummer.  The best teacher I ever worked with was dual certified in elementary ed. and art.  She could get more out of a 5th grade class than anyone would think possible because she had the artsy fartsy brain that could see and capitalize on every kid's strong points.  Other teachers often came to her for suggestions with "problem" children.  They were perfectly good teachers but couldn't always "see" what she could.

    I'm not even sure what my point is here, except that I agree with you.  If you have any input into the IEPs, tell them to remove the "time" thing.  They may not do it, but just give them the 'broken record' for removal every quarter (or whatever the time-frame is for the updates).  Look for things that will assist your child to deal with time as best she (I think it's she?) can.  If I can be of help with research or ideas, let me know.  I love looking sh*t up!  :-)

    -7.62, -7.28 "Hold fast to dreams, for if dreams die, life is a broken winged bird that cannot fly." -Langston Hughes

    by luckylizard on Thu May 03, 2012 at 09:27:26 AM PDT

    •  Don't limit (5+ / 0-)
      We wouldn't expect a hearing impaired person to become a virtuoso violinist or a violinist to be a bricklayer.
      These is at least one profoundly deaf musician in a major symphony orchestra, admittedly she is a timpanist. Several professional dancers are also deaf - again not what you would expect of them.

      Winston Churchill's hobbies were watercolor painting and bricklaying. He was possibly on the AS, certainly bipolar and definitely alcoholic.

      Too many in education expect outcomes because of external factors. Poverty and living in the inner city does not equal poor academic achievement. Our London borough ranges from very low income social housing (where my school is) to very high income suburban areas. The school is "expected" to have low attainment and lived down to that expectation until as governors we decided that it was unacceptable. A couple of new principals later we have turned round from being in the lowest quartile to around the average for the borough.

      In a survey last year, nearly 100% of parents said they thought the school provided a good education for their children. That's not good enough for us. We want them to demand better and to expect that their children will be enabled to achieve more despite poverty at home. We have 9, 10 and 11 year old pupils from the school council at some of our meetings letting us know their concerns about the school. Earlier we appointed a deputy headteacher (vice-principal) in a three part selection. The candidates had to make a presentation on a selected topic and be interviewed by the governors but the third part was an interview by the school council and their views were brought back to us. Frankly at times I have been staggered by their confidence, talent and erudition.

      Fight poverty, oppression, hunger, ignorance, disease and aggression wherever they occur.

      by Lib Dem FoP on Thu May 03, 2012 at 09:47:52 AM PDT

      [ Parent ]

      •  I'm encouraged (4+ / 0-)
        Recommended by:
        weck, coquiero, worldlotus, second alto

        by the atmosphere and process you describe.  Would that we could do that here...

        I deliberately chose a violinist because the level of aural acuity required for stringed instruments is particularly high.  I can envision a tympanist much more easily because the pitch/vibration range is much smaller.  I am no expert on hearing impairment, but I do know that many of those with such challenges can have ranges in which their hearing is somewhat better than in others.  I would not expect someone with significant loss to be able to negotiate the almost infinitesimal differences in pitch between and E-flat and a D-sharp in two or three octaves.  To be honest, I can't do it, but I'm told that good string players can.

        As far as people having diverse and numerous talents, I totally agree.  A friend was here yesterday so that I could help her run address labels and print invitations for her daughter's graduation party.  There was the usual trial error involved in setting up text on a pre-printed card, and that took some length of time.  Frankly, she considers computers magic.  (I've gotten her away from calling the witchcraft.)  I was showing her some little wood crafts that I just finished and also a psalm that I'd composed for Confirmation.  She remarked at how many things I can do at least adequately.  The things I do, I do well.  The other stuff, I ignore.  I only have one lifetime and will never finish all I have to do.  The rest will have to be outsourced or just left undone.  :-)

        -7.62, -7.28 "Hold fast to dreams, for if dreams die, life is a broken winged bird that cannot fly." -Langston Hughes

        by luckylizard on Thu May 03, 2012 at 10:59:25 AM PDT

        [ Parent ]

  •  appreciate your frustration (6+ / 0-)

    Both my son and I have ADHD. I have an associate who has Asberger's. Although this is not autism, I suspect there are some similarities in successful approaches to education.

    Based on just my own experience, I favor the development of strengths. That's the current wisdom in ADHD coaching circles for adults - forget about what we're bad at, try to find outside support for those areas, and focus on building skills and talents in the areas of natural talent and inclination.

    (By the way, have you heard of those "time-timer" clocks - they have no numbers, but measure out time in pie-slices that gradually get smaller as time passes.)

    The public school system probably just has the obligation to teach kids the basics no matter what their strengths or skills are, right? It's what they're set up to do. No one cares about developing a kid's potential - they care about meeting minimum State requirements. I feel like my son is falling through the cracks and wasting his time there, even with an IEP.

    The "one size fits all" approach to education fails to cultivate the unique abilities or to respect the differences between individuals. It's geared for preparing people to enter the workforce and not much else.

    So, I agree with you - but I'm not sure (yet) what the solution is.

    •  You hit the nail on the head (4+ / 0-)
      The public school system probably just has the obligation to teach kids the basics no matter what their strengths or skills are, right? It's what they're set up to do. No one cares about developing a kid's potential - they care about meeting minimum State requirements.
      That is exactly what I'm coming up against.  But I'll be damned if they're going to do it with my daughter's education.  They'll find that it's much more effort to meet minimum State requirements than it is to just do what I'm asking to get me to shut up and leave them alone.  :)

      I blog about my daughter with autism at her website

      by coquiero on Thu May 03, 2012 at 11:45:10 AM PDT

      [ Parent ]

  •  coquiero, first an affirming heart hug. I sooo (7+ / 0-)

    understand where you are coming from.  And it should not have to be this way-never for the student, never for the parent & oddly, not for the teacher (who is left with the post grad discovery that practical application is not black & white..and experience trumps....)

    Not sure of your child's age, but if your child is not yet in middle school, know that starting in middle school the shift towards vocational "training" intensifies.  A little something I did not know & was taken by surprise.

    Something else I learned doing intensive research in the middle school years was that each child in Sp Ed with an IEP should have a transition plan that begins at (basically) at birth.  

    The transition plans ideally should cover sequential life stages, be a joint parental-IEP team involvement, reviewed regularly with the end result being the realization of the end goal for adulthood.

    An example of this would be that by the time little Johnny or Sally enters school, the parents would have in mind what they envision adulthood to hold for their child.  Educators would do the same.   From this, "transition" goals would be established that covered every year in elementry school working towards that goal.  Same in middle school & high school.

    Transition plans would also factor in what was needed to successfully transition from pre-K to elementry; from elementry to middle school; from middle school to high school & then from high school to adulthood.

    I am now in my 15th year of IEPs, pre-K to high school, and have yet to see this formally done with my child or known anyone involved in the process that even knows about this.

     Heartsick is probably not the correct word to describe my discovery of this-as my child was entering high school-as I thought of the many many children impacted over the years.

    I want to encourage you to be prepared to strike down any "goal or objective" that is not educational or not meaningful to you at the IEP.  This is not about the teacher or the school districts policy & procedures.  It is about a human being's life-your child.  

    Your child, who, by the way, is fully protected by many federal acts including Section 504 which is enforced by the OCR (Office for Civil Rights)

    See letter that went out to school districts in January 2012 here:

    http://www.ed.gov/...

    The public schools receive federal fundings (even lunch program fundings count).  They have to comply with all federal acts or lose funding.  Comply also means modifications where needed or wanted.  You have multiple federal laws on your side.

    I was an advocate & non profit EI teacher for kiddos with special needs ages birth to age 5 before becoming mommy to one.  I was fortunate with having that background to a certain extent, however still was not fully prepared for the vast differences-interpretations-complicance levels in the public school system.  

    Just like every other parent, I had to learn quickly to chose my battles.  Yours currently is the time thing-one of mine was about tying shoes.  The universe provided the means to invent velcro, agendas, story boards/books, digital/auditory time devices.  There is no necessity in wasting finite valuable time in teaching that which takes away from other more revelant things.

    Out of the 15 years in the IEP world, we have only had two teachers that sound like yours.  In both cases, they were new to teaching special ed.  In both cases they created an atmosphere that caused my school loving child to want to stay home. In both cases, there was an authoritarian mindset that defys belief...

    We made the mistake of giving them both the benefit of the doubt until mid year.  By then, our anger & distrust was at critical point; our child's discomfort at a max.

    It took numerous specially called meetings-with the entire county's big guns in attendance-to work things out.  The last instance, in 8th grade, was so intense that we hired an educational advocate.  (Heh, for their protection)

    It does not have to be adversarial & I personally prefer it not to be.  Knowing what the acts/laws are & how they should be enforced helps.  If for no other reason than to bring change to a district, a classroom or a teacher, I advocate knowing the full scope of federal protections & using them to fit the individual needs of the person with disabilty.  

    Plus just the reminder or mention of any particular law has magical qualities :)

    Sometimes it also helps to go to the State Dept of Education & scope out their rulings.  I did this during our 8th grade fiasco & accidently discovered a new program being implemented that year for high school kiddos.  A program that enabled those with even the severest ID to enroll in & take for credits the same courses as regular ed peers.  With individualized modifications AND the ability to take as long as neccessary to complete.  Which basically translates into being able to take the course work, receive credits until age 22...with FAPE.

    Ahem.  No one in the school district mentioned this program nor seemed to know about it when I brought it up at the IEP.  Largest district in our state with purported label of excellance...

    Needless to say, my child entered high school enrolled in that program.  Now 3 years later, I imagine our next "battle" is going to be the honoring of that state program's rule regarding "until age 22".  

    Sigh, the push around here is graduation at 18 into some program that focuses on life skills & jobs.  Feels like a model of "Ok, did the FAPE lip service obligatory thing-we're done. Next."  And I cannot tell you how badly that pisses me off-for all the kiddos involved who never receive the exposure to the same type of education as their non disabled peers.

    Wearily chosing my battles yet again means letting them know that my child has a lifetime to learn how to fill salt shakers or whatever, but only a finite time to receive FAPE (emphasis on education)  Harumph.

    Remember as you do battle that you have a knowledge of your child that no one else can or does have & that there are federal acts/laws in place that trumps any argument that your district can make re "can't".  Good luck.  Here's another heart hug.

    •  Gosh, worldlotus, your story and mine are so (3+ / 0-)
      Recommended by:
      worldlotus, FloridaSNMOM, second alto

      similar...

      Same thing with inflexible, authoritarian teacher.  Same thing with "giving the benefit of the doubt" until a massive intervention needed to be staged. Only difference is this isn't a new teacher, she's just an incompetent one who is sure she's always right, even when demonstrated to be profoundly wrong.

      But then like an idiot I gave her the benefit of the doubt AGAIN, only academically this time, come to find out that she pretty much is teaching whatever the fuck she wants to in that class, regardless of the fact that I insisted that we lose time and money as a goal on the IEP.

      I'll give the AP the chance to go in and observe, but after that we are having a meeting in person and this is going to be hashed out.

      As far as I'm concerned, they are out of compliance with the IEP, and there is going to be a very uncomfortable conversation.

      I blog about my daughter with autism at her website

      by coquiero on Thu May 03, 2012 at 11:33:18 AM PDT

      [ Parent ]

  •  It's time to switch the focus of time... (7+ / 0-)

    from teaching how to tell time to compensation techniques to deal with the world. There are ways around this, very simple ways.

    A talking watch is the first thing that comes to mind. That will tell him the time instead of him having to read it. You can get talking watches for about the same price as a typical watch, my other half uses them because he can't see the face of a watch well enough to read it.

    Some talking watches on Amazon

    Teaching him to use alarms for things like lunch breaks, when to leave for the bus, etc is another compensation technique. This is one I use because I have no sense of time, not sure if your son has that in addition to not being able to read a clock.

    Perhaps with some compensation techniques and lack of pressure he'll figure it out on his own, it happens that way sometimes. But this way at least he'll have the ability to function in the working world, and you'll have room on the IEP for another, more important and accomplish-able goal.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Thu May 03, 2012 at 10:35:17 AM PDT

  •  Tying shoes (4+ / 0-)

    Someone wanted "tying shoes" on his goals because he couldn't and she decided he was "embarrassed" when having to ask others for help.

    I painstakingly explained that
       a)  he wasn't embarrassed.
       b)  he could wear loafers, shoes with velcro ties or mocs if he decides he's embarrassed.
       or c) he could wear alternate shoes if she just felt that tying his shoe now and then was too much wear and tear on her system.

    That was the end of tying shoes as a goal.

    Any goal that spends a full year on the IEP without any progress needs to be removed or re-thought, in my opinion.  Goals on which there is no progress stand as monuments to failure to both the school and the family.  I have enough of those in my life without them being federally mandated.....

    •  I cannot reccomend this enough: (3+ / 0-)
      Recommended by:
      coquiero, FloridaSNMOM, second alto
      Any goal that spends a full year on the IEP without any progress needs to be removed or re-thought
      Before I became mommy, I had a second job as an activies coordinator for UCP"s after school program.  This was back in the 80's to mid 90's.  We had copies of each participants IEP goals so that we could design activities that would enhance their individual goals/objectives.

      This was my 1st glimpse into the public school system IEP process.  I am not making this up-there were actually goals that had rolled from year to year on most of the kiddos IEP.  Pretty frightening and horrific to see the same goals on a 16 or 20 year old's IEP that was put into place when they were 5!!!!  

      Hopefully this has changed since the 90's.  Hopefully.

      Tying shoes for us was not as bad as the 8th grade Hun teacher who proclaimed that personal hygiene goals were going to be implemented-for every child in class.

      Whether needed or not.  Which included learning to put on deodorant & shaving & washing hands.  Which would take up a minimum an hour of instructional time daily.

      Originally, I was incredulous. First, my child had not develpmentally reached the stage to do either.  Second, it was not an appropriate (in school) goal for any of the kiddos.  Third, an hour or more was not then being devoted to education. Fourth, handwashing should be the frigging norm at varied times in school, period.  Fifth, these were activities that could be addressed in our roles as parents.

      My incredulous self turned into seething self when teacher refused to listen or address the above points & actually decreed that it would happen whether we agreed or not..

      That & other issues is when we reached a point of no return & hired an advocate.

      How in the world can someone teach another how to shave if there are no hairs to shave?
      Not to mention the sensory defensiveness at play with my child that has taken a lifetime of hard work to diffuse...

       Equally important is how appropriate is it to do at school-regular ed peers do not have time taken away from education to be taught to shave or apply deodorant or wash hands...(ARGH)

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