It really takes a village

First, thank you. For the support and the suggestions, all of which we've been contemplating.  We do want to have another IEP meeting as soon as possible—-we know we have to get Charlie into some other setting. 

Charle at the library the night of Jim's talk

I was undone by my emotions. The result of the meeting was the request for an out-of-district placement and a Functional Behavioral Assessment by an independent evaluator to revise Charlie's Behavior Intervention Plan (BIP) (which specifies the use of a helmet); the Supervisor of Special Education initially said that there was no need to revise Charlie's IEP (and therefore the BIP, which is part of it) prior to his going to a new placement, and that this would be done after he was in the new placement.

Her words invoked precisely the reason that we had said no (as the Supervisor of Special Education pointed out) to placement at this particular center. It is quite large; for this reason, we had again sought admittance for Charlie into a much smaller, private autism school. He was rejected from all of these and so the center is the only option. And once Charlie is out of a local public school in our town—where he is seen by other students and members of the community—it's not unlikely that he'll be out of sight and out of mind. Certainly, I would rather think, from the point of view of the special education administration in our town. Charlie at a large autism center means that they'll be a whole new bureaucracy to wade through.

And it means that Charlie will be removed from the community. Ensuring that Charlie can be out and about in so many places has been a key part of Jim's and my advocacy for him. We'll still keep taking Charlie places—if anything, Charlie going to this new center means that we'll be doing everything we can to make sure that he sees as much of the world as he might, and that the world sees him.

It's a truism. But it really takes a village, an entire community, to raise a child like Charlie. We'd be the last people to deny the extend of his needs and the fact that sometimes, things are really, really tough; really beyond difficult. (Though dealing with Charlie's toughest moments is preferable to IEP contention with school district staff, what can I say.) But it really takes everybody opening up their hearts and minds to see Charlie as he is—not the potentially violent kid who's kept contained in a helmet and "three-man protective holds"—-but as Charlie, as 12-year-old kid who tries his best and aims to please and who makes our world brighter and more beautiful every single day.

The village that is our town has failed Charlie and, once again, we feel that all we can do is hang onto Charlie and get him out as quickly as we can.  

And we all know who the biggest loser is. 

The photo is of Charlie at the town library Wednesday night during Jim's talk about his new book, On the Irish Waterfront.

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Comments
29 Responses to “It really takes a village”
  1. farmwifetwo says:

    This is why I’m disgusted with ASAN and HFA/Aspie/NLD Hub-ites. IMO they ignore children like Charlie, they don’t exist, I have read posts about how they aren’t even Autistic. They write posts about how they don’t want to hear about behavioural issues because they don’t want to be “tarred with the same brush”…. I could go on for hours, with the links too…
    Instead of rallying around one of their long time members/posters, a woman that’s worked hard to raise the awareness of autism they are busy whining about Autism Speaks. Not one has written a post, a letter etc online in your defence.
    So IMO Autism Speaks wins. They win b/c ASAN/Hub won’t back up/defend the end of the spectrum that needs them the most. And that disgusts me. They don’t want to admit that autism isn’t all roses nor is it a cutsie club. It is a disability, and autistics come in all shapes, sizes, language, social and behavioural issues.
    Yes, it does take a village to raise a child.
    Hopefully, his new “village” will do a much better job.

  2. a parent says:

    Wow… I guess what you see has to do with your perspective. I see a school system (and a group of poorly trained ABA experts) that refuses to see the potential of an autistic youth. Who refuse to take input from “non-professionals” (i.e. parents) or even consider the possibility that they do not have all the answers. To me it seems like these folks are the ones who need to be informed about the humanity and specialness of the broad array of autistic individuals. It means opening your heart and your mind to different perspectives.
    From my point of view, the decision to move on to a different placement is done, but the harder task of changing what’s really happening and how Charlie and Kristina and Jim are treated has a long way to go. At this point I’d be focusing on getting a good rapport going with the transition team and writing off the current team.

  3. Emma says:

    I agree with @a parent, Charlie needs to be in a setting that values and respects him. It is a failure of the system, it is rarely designed to adapt to the needs of the individual, but expects the individual to adapt to the system.
    Dimitri has never been to a school in our neighbourhood, and it is something that has always bothered me – he has no friends his age here, but he is known by many people (plenty of shop owners)and they (almost) always treat him as a 9 year old tryin his best, and many kids say hello although they are of the age that doesn’t appreciate his big hugs.
    I hope this will turn out to be something of a new beginning for Charlie, you and Jim, one which doesn’t involve the beaurocratic nightmare, or the use of restraint.

  4. autismvox says:

    @ a parent & Emma,
    I woke up (Jim too) actually feeling quite good about things. We just wanted to make sure that about getting Charlie out. I’m not so sure how it will go with the transition; much of the information about Charlie will come from the school, so you can imagine what their picture of Charlie will be. On the other hand, it will be good to out of the old placement and to give Charlie a new start.
    Charlie is definitely known in the neighborhood—the man at the sushi counter knows that eel is his favorite.

  5. autismvox says:

    @ a parent & Emma,
    I woke up (Jim too) actually feeling quite good about things. We just wanted to make sure that about getting Charlie out. I’m not so sure how it will go with the transition; much of the information about Charlie will come from the school, so you can imagine what their picture of Charlie will be. On the other hand, it will be good to out of the old placement and to give Charlie a new start.
    Charlie is definitely known in the neighborhood—the man at the sushi counter knows that eel is his favorite.

  6. Emily says:

    Wow, Kristina. How dare you have your child in a public library without his helmet and a three-person team ready to put a hold on him at a moment’s notice.
    Farmwife, I’d like to note here for the record that Kristina does not describe life with Charlie as “cutesy” or “glorious.” She gives us a complete story, one of great difficulties and great joy.
    Charlie’s situation is not somehow ASAN’s fault. ASAN does great work that helps not only all autistics but also all people with developmental disorders or differences. They force others to reconsider their stereotype of autism and to view autism from a different perspective. That helps everyone, not just autistic people, because once people begin that process of reconsideration, they can do that with just about anything else. ASAN’s work comes from a solid moral and ethical framework that influences the common good beneficially.
    It doesn’t, however, help bureaucracies more interested in CYA than in doing the appropriate moral and ethical thing. Their work is for themselves, not the common good, and their behavior is indefensible. And so Charlie’s proximal cause of trouble here is these people and the system that facilitates *their* behavior. ASAN is working against exactly that.
    I hold hope–on no grounds other than cautiously optimistic pessimism–that Charlie’s new placement will be good for your entire family, Kristina. “A parent” has great advice. And I hope, this time with a more empirical basis, that you and your team of three have a great weekend.

  7. Emily says:

    Wow, Kristina. How dare you have your child in a public library without his helmet and a three-person team ready to put a hold on him at a moment’s notice.
    Farmwife, I’d like to note here for the record that Kristina does not describe life with Charlie as “cutesy” or “glorious.” She gives us a complete story, one of great difficulties and great joy.
    Charlie’s situation is not somehow ASAN’s fault. ASAN does great work that helps not only all autistics but also all people with developmental disorders or differences. They force others to reconsider their stereotype of autism and to view autism from a different perspective. That helps everyone, not just autistic people, because once people begin that process of reconsideration, they can do that with just about anything else. ASAN’s work comes from a solid moral and ethical framework that influences the common good beneficially.
    It doesn’t, however, help bureaucracies more interested in CYA than in doing the appropriate moral and ethical thing. Their work is for themselves, not the common good, and their behavior is indefensible. And so Charlie’s proximal cause of trouble here is these people and the system that facilitates *their* behavior. ASAN is working against exactly that.
    I hold hope–on no grounds other than cautiously optimistic pessimism–that Charlie’s new placement will be good for your entire family, Kristina. “A parent” has great advice. And I hope, this time with a more empirical basis, that you and your team of three have a great weekend.

  8. MATeacher says:

    I work at one of those medium-sized (and getting larger) schools that serve students from many towns. There is another program, a couple towns over, that serves the some population as we do, but is housed in a public school. Many of the parents that chose them over us cite the need for inclusion, or being in a typical school, (most of our students are not included for any of their instruction) as their primary reason. When the topic comes up with the parents of students who come to our school, most of them say that they feel that the child has lots of opportunities to be with other typically developing children after school, either in their community or among family/cousins, that this is not a significant concern for them.
    I don’t think anyone here doubts for a moment that Charlie will get at least as much community exposure while at his new school than he does now. Perhaps even more, because he will be less stressed, and able to enjoy his time with his parents, and because the school will be able to provide better quality programming for him, which as he gets older, means real life community/vocational experiences.

  9. feebee says:

    My 8 year old has seen to the heart of it: I said Charlie has to wear that helmet when he gets upset at school because the school doesn’t want to figure out what makes him get upset. She said “Well, that’s a bad school!”

  10. Synesthesia says:

    Farmwife, you’re starting to annoy me.
    Of course they’re going to be bad at Autism Speaks because their stereotyping and fear mongering pretty much leads to situations like this! When they go on and on about “autism ruining going out in public” or something silly like this it makes situations harder for autistic people because they are not thinking, hmm, maybe there is a reason why this child or adult is melting down (such as i did when this computer froze for no reason)
    Plus there are all of these people trying to get a wheelchair for someone when autism speaks isn’t bothered with that despite having the money for a $500 wheelchair.
    ASAN and autism hubs are trying to change attitudes about autism to make things better for autistic people.
    I hope Charlie can get a better setting that will try to understand him and help him instead of fearing him. As that’s so annoying for you. Sorry you’re all going through that.

  11. Synesthesia says:

    Farmwife, you’re starting to annoy me.
    Of course they’re going to be bad at Autism Speaks because their stereotyping and fear mongering pretty much leads to situations like this! When they go on and on about “autism ruining going out in public” or something silly like this it makes situations harder for autistic people because they are not thinking, hmm, maybe there is a reason why this child or adult is melting down (such as i did when this computer froze for no reason)
    Plus there are all of these people trying to get a wheelchair for someone when autism speaks isn’t bothered with that despite having the money for a $500 wheelchair.
    ASAN and autism hubs are trying to change attitudes about autism to make things better for autistic people.
    I hope Charlie can get a better setting that will try to understand him and help him instead of fearing him. As that’s so annoying for you. Sorry you’re all going through that.

  12. Dwight F says:

    It certainly is a “bad” school for Charlie. For others it may be passable but not for him.
    Is a typed earlier this morning in an old, pre-typepad post (I didn’t realize I had so much catching up to do :P), steady, methodical, and firm is going to get you all through. Now as much as back on the 16th.
    I really like what I think MATeacher is getting at, it’s why we felt OK with G going a relatively segrated route at school. Inclusion in a classroom is all well and good, G is actually moving that way this year, but your ultimate goal that I’ve read from is inclusion of Charlie in the wider community. Where he’ll spend the majority of his life, potentially some of it without you or Jim.
    One does not have to be the other. School is not the “real world”. Making the school like the “real world” is far too often an excuse for some rather inhuman and counter-productive policy. School is the place where kids learn some basic skills that they later adapt to the outside world. Not all kids are the same, why the need for every kid to learn in the same environment?
    You and Jim care deeply. You clearly have that ultimate goal in mind. You’ll adapt and move on from this bump in the road. You’ll find the most appropriate, healthy place for Charlie to build his base, and you’ll be there to help him to adapt that base for use in the world at large.
    Why do I say that with so much conviction? Because you’ve done it over and over before. Why would I doubt that you’ll do it again?
    🙂

  13. autismvox says:

    @feebee, can I quote your daughter?
    @MAT teacher, Those are exactly the reasons we’ve tried to keep Charlie where he currently is. The center is separate and takes students from a number of towns. Our town has an in-district vocational program and just built a whole classroom with a kitchen in it. The new place (new for Charlie that is) has the same, though not all the students have that kind of training. (One mother I spoke to whose 20 year old daughter is there told me she sits around and strings beads.)
    We do know a couple of families with children there and I think there are events with other families which would be good to attend (I still really don’t know the parents of the other kids in Charlie’s current class, though they’ve been together for 3 years).
    @Dwight F, I really like how you write about inclusion in the “real world.” Steady, methodical, and firm, I’m remembering that…..

  14. Dwight F says:

    Incidentally farmwifetwo, I’m going to have to disagree with you as well. If you don’t think that “Hub-ites” rally against, and work to resolve issues like Charlie’s helmet and poor adjustment to Charlie’s individual needs then I convinced you do not understand what you criticize.

  15. autismvox says:

    Regarding the Autism Speaks video and the organization more generally: Having spent a fair amount of blogging time critiquing the organization and its videos, I haven’t found such critiques the best use of my blogging and advocacy time. I’m not world’s biggest fan of AS and certainly not of their media campaigns.
    For one thing, if you take the stance is awful, devastating, ruins lives, etc., you could easily use my, ahem, performance at yesterday’s IEP meeting as an example of “see how life with autism has made this mother into a poor stressed out thing?”
    When personally, while Charlie has plenty of challenges, the non-responsiveness of the school district to our suggestions to remove the helmet and their talking about helmets and “three-man protective holds” as business as usual—that irked me beyond belief. And to some extent, this is why I’m not the fondest of videos like the AS one—-once again, even Charlie’s toughest anxiety attacks (when he gets physical) are something I’d rather deal with than talking to the special education administrators.
    I’d just much rather that the occupational therapist who reported that Charlie was put into one of those holds (thought the school district did not tell us this), the speech therapist, and the physical therapist who all left the meeting after 15 or so minutes (they were just there to re-evaluate Charlie, though what was going to happen was already written on the wall)—-that people understand that the video in the link below is about life with autism, as it is, every day.
    http://kristinachew.com/Site/vox/Entries/2009/8/10_Row%2C_Row%2C_Row_the_Kayak.html

  16. Synesthesia says:

    Dang… one would think those administrators would be more understanding and helpful…
    useful… *thinks of With the Light where they are going through the same thing trying to keep their child in the community.*

  17. Synesthesia says:

    Dang… one would think those administrators would be more understanding and helpful…
    useful… *thinks of With the Light where they are going through the same thing trying to keep their child in the community.*

  18. Good for that OT to tell you about the hold. Would Charlie be getting a brand new aide? I agree about time being wasted blogging about AS and their videos. I have not had time or the desire to look at the latest one, just the wording was enough for me to avoid it. In a few months I will be in mode for applying for Nick to high school and that will be quite stressful, after that process wait for May to see if approved, if not need some backup ones so will be looking early next yr, plus have to prepare for summer activities (camp for Matt) and then a high school for Matt. This is the lull before all that.
    We do have IEP mtg Oct 7th to discuss OT assessment since they wanted to switch to consult (I asked for assessment) and now that Speech has seen him will be doing a new goal to replace 4th grade one. Matt also achieved his self help goal of zipping his jacket and I asked teacher for new goal. I may have a fight, but looking positive toward this as I requested all this.

  19. Jennifer says:

    You know, I’ve been on both “sides” of the table, and the memory of being alone with my mother on the family “side” is why I hold IEPs around a round table if I can, and why I sit next to the parent, if I can’t. Being told that my brother in no way was cognitively capable of sorting laundry, much less being in charge of laundry for the whole household, including sorting, washing, folding, and distributing to the right person, *after* volunteering to videotape just such a thing, is a memory I will carry forever.
    This was, of course, the same team that said Patrick would never be able to subtract or tell time in any meaningful way — the same young man who once told me at Disneyland that the fireworks (which start at 9:25) would be beginning in 13 minutes, having been told it was 9:12…which is my long-winded way of saying what you already know: schools can be wrong, and schools can underestimate kids.
    The way the school district treated you is ridiculous…I’ve had (two rare but memorable) disagreements with parents before, but I was always clear and up front (I hope) that I valued their input and that I, above anything and everything else, wanted what was best for their child. I hope they never felt devalued the way you and Jim did.
    At the beginning of the school year, the first thing I tell parents is that while I might know more about teaching methods and curriculum — parents are the experts about their kids. No teacher, and no school district — and definitely no parent — should ever forget that.

  20. Jennifer says:

    You know, I’ve been on both “sides” of the table, and the memory of being alone with my mother on the family “side” is why I hold IEPs around a round table if I can, and why I sit next to the parent, if I can’t. Being told that my brother in no way was cognitively capable of sorting laundry, much less being in charge of laundry for the whole household, including sorting, washing, folding, and distributing to the right person, *after* volunteering to videotape just such a thing, is a memory I will carry forever.
    This was, of course, the same team that said Patrick would never be able to subtract or tell time in any meaningful way — the same young man who once told me at Disneyland that the fireworks (which start at 9:25) would be beginning in 13 minutes, having been told it was 9:12…which is my long-winded way of saying what you already know: schools can be wrong, and schools can underestimate kids.
    The way the school district treated you is ridiculous…I’ve had (two rare but memorable) disagreements with parents before, but I was always clear and up front (I hope) that I valued their input and that I, above anything and everything else, wanted what was best for their child. I hope they never felt devalued the way you and Jim did.
    At the beginning of the school year, the first thing I tell parents is that while I might know more about teaching methods and curriculum — parents are the experts about their kids. No teacher, and no school district — and definitely no parent — should ever forget that.

  21. Emily says:

    Jennifer, can you clone yourself to be present at every IEP meeting ever held?

  22. Emily says:

    Jennifer, can you clone yourself to be present at every IEP meeting ever held?

  23. autismvox says:

    @Bonnie, I think everything, staff included, will be new for Charlie. I don’t know if they will allow us to do this (sigh), but I would like to be present for some of the first days that Charlie is there, and Jim too. We are very attuned to his communications and I think it would help. Ok, if I may say so, I know it would help!
    @Jennifer, seconding what Emily wrote…. now that you mention it, the only time we had a meeting at a round table was in the office of the supervisor of special ed. That was actually where the meeting was scheduled to be.
    Instead it was in a conference room with a long table and everyone seated on both sides. Jim took a seat at the end on the side and I went to the head of the table. I think I would rather have sat by him…..or have told them, um, we didn’t know we were meeting here or with all these people……. Thank you for your words (here and on many other posts). I got so angry because I felt as if I were talking to people who were living in an alternate reality, and refused even to consider any other one (especially one in which Charlie did not wear a helmet).

  24. AnneC says:

    kristina: re. the “alternate reality” thing, I suspect I know exactly what you mean even though I am not a parent (rather, an adult on the spectrum myself). There seems to be this weird notion in a lot of people’s heads that autistic people really are somehow…less three-dimensional than nonautistic people, and consequently can be “dealt with” using simplistic “recipes”. There is so much about a person that you just can’t even see unless you are willing to see it, and Charlie’s school district people seem very unwilling to do this. As soon as you started this series of posts (the one starting with the helmet post) my first thought was “eep, the school has totally written off this kid, and he needs to get out of there ASAP”.

  25. Niksmom says:

    Um, I got distracted by the comment by Farmwife so I may have missed something. Do I understand that you’ve been told there is NO OTHER PLACE for Charlie beyond the residential placement which school was trying to force on you? I don’t know that I would accept that simply on their say-so.
    Clearly, LRE isn’t even being considered by school, but it is something I would consider having a legal advocate push for just that. Charlie’s ability to function so beautifully out in the community speaks volumes AGAINST the need for a residential placement. Just because it’s the only option available doesn’t make it the best option for Charlie. What about funding for a home teacher? If you haven’t already, I think it may be time to hire an attorney. Certainly, time to consult with one.
    Farmwife, just because someone isn’t screaming about the horrible end-times type of scenarios you seem to think encompass all autistics, doesn’t mean we think it’s all rainbows and unicorns. And, to your point about how no one is writing about Charlie’s situation…what would you have us write that Kristina hasn’t already written? Or, what would you have us write about a story which is not ours to share? Advocating for respect and dignity can be done by anyone, anywhere. It’s not your place or mine to fight Charlie’s battle unless we are asked to. Many of those same people you accuse of “whining about Autism Speaks” have been supporting Kristina, Jim and Charlie in public comments offering moral support as well as some very concrete and tangible strategies. There are also many people with whome Kristina communicates in a not-so-public fashion. Just because you can’t see it (and comment on it) doesn’t mean it doesn’t exist.

  26. autismvox says:

    @Niksmom, sorry I wasn’t clearer…..there is another placement, the large county autism center. Bancroft/residential placement is not an option on our list, not at all!
    We have been thinking of homeschooling. However, we can’t make that work at the moment due to our jobs …but I’m doing my research and reaching out some feelers….
    @AnneC,
    All I can think about is getting Charlie out of there. I felt like I was talking to people who spoke a different language or were from, I don’t know, another planet, at the Friday meeting. They simply refused to think that Charlie would be anything than the violent/dangerous boy in the helmet. And there are lots of assumptions about what Charlie thinks and why he does what he does…. I tried to explain to his teacher about his latest difficulties with “yes” and “no” confusion. She responded with words to the effect that “we respect Charlie’s wishes” —- but I’m not so sure that they really know what those “wishes” are.

  27. autismvox says:

    @Niksmom, sorry I wasn’t clearer…..there is another placement, the large county autism center. Bancroft/residential placement is not an option on our list, not at all!
    We have been thinking of homeschooling. However, we can’t make that work at the moment due to our jobs …but I’m doing my research and reaching out some feelers….
    @AnneC,
    All I can think about is getting Charlie out of there. I felt like I was talking to people who spoke a different language or were from, I don’t know, another planet, at the Friday meeting. They simply refused to think that Charlie would be anything than the violent/dangerous boy in the helmet. And there are lots of assumptions about what Charlie thinks and why he does what he does…. I tried to explain to his teacher about his latest difficulties with “yes” and “no” confusion. She responded with words to the effect that “we respect Charlie’s wishes” —- but I’m not so sure that they really know what those “wishes” are.

  28. a parent says:

    Here’s my example of so-called experts who seem to be from another planet where logic and compassion just don’t exist. Thursday pm, just before what’s supposed to be a relaxed 3 day weekend I’m ambushed by my son’s behavior tech. He’s got “bad behavior problems” that are “only going to get worse” as he heads into middle school. He’s “manipulative” (by which she means he acts up too get out of situations that are unpleasant/overwhelming/tedious). To stop this from happening (i.e. force him to put up with whatever is on the agenda without complaints) we need a behavior improvement plan where we remove things from his non-school time that he likes, if he doesn’t comply. I’m not sure how I’m supposed to inforce this no computer, no TV, no toys, no books time, but that’s another question. Who’s being manipulative in this story? If it weren’t for the fact that my son says he likes this woman I’d be telling the service that provides her that this just isn’t working out. I said I’d ask the special educator at his school if she thought we needed a BIP. Given that it’s just the start of the school year and they swapped aides on him at the last minute, I’d say cut him some slack. Sometimes this nonsense just makes me want to scream.

  29. AnneC says:

    Yeah. Exactly. This is something I noticed a while back, that there is this perception of at least some autistic people as “needing” restraints, institutions, etc. And this is what supposedly justifies all the gloom-and-doom rhetoric about autism, the idea that there are these poor tragic souls who, without “cures”, MUST be dehumanized, institutionalized, etc., “for their own good”, or even merely because they are “severely autistic”.
    And…I of course reject this mentality. Because I have some amount of standard language I know I have certain privileges that kids more like Charlie do not. This does not go unacknowledged no matter what certain trolls might claim.
    But I can darn well understand, due to my own sensory and cognitive experience, what kinds of things might drive someone to bang their head or otherwise seem to “act out”. And a lot of it is stuff that people (say, school personnel and others with power over the autistic person in daily settings) don’t even realize they’re doing, or don’t realize the effect of.
    Like not allowing “downtime”, or focusing on stopping something before understanding why someone is doing it, or not appreciating things like language processing delays, noise sensitivity, and so on. When I was growing up I spent a lot of my time in school just feeling totally overwhelmed with the amount of constant vigilance that was demanded, the amount of “you must respond to this in this way” that went on all day.
    And I know some of that is necessary and some structure was and is definitely good, but there’s a difference between useful structure and the kind of overbearingness that seeks to “teach someone their place”, whether it’s put in those terms or not. Not to mention so much sensory stuff just isn’t recognized — as a kid the fact that I wore headphones a lot (no iPods back then, I had a Walkman with cassette player!) was considered a “weird behavior” and also “anti-social” but nobody even thought to consider (and I didn’t have the communication skills to explain at the time) that I was trying to block out external noise, like school bus cacophony.
    Anyway, I REALLY hope Charlie gets into a better educational situation, and soon. I just can’t believe the audacity (in a bad way) of people who would seemingly just want to shuffle him off to some warehouse as if he has no potential and nothing to offer to his community, when clearly he has a lot!

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