Ketchup Action



IMG_0189We went into New York (Tribeca—I don't know the neighborhoods in NYC at all; asked my constant guide, Jim) on Sunday evening. I met up with some Change.org folks and Charlie and Jim sat at a table across the aisle and dined on burgers (Charlie) and shrimp (Jim). Charlie had that beaming look on his face as we walked back to the PATH station at the WTC site. We haven't been going into New York as regularly as we were for awhile and I think he was darn pleased to be out and about in the city.

I am sorry, this boy is not going to any residential placement!

IMG_0190
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6 Responses to “Ketchup Action”
  1. shannon says:

    I’ve been thinking and thinking and waking up thinking about your previous post. It’s so important to fight for all of our kids to receive the best public education possible, but when it comes down to our own individual kids? We do what is best for them. If homeschooling is the LRE and best place for Charlie to learn right now — *and you can ensure that you will have respite breaks* — then do it. But I worry about you burning out, and about how thinly your professional self can be stretched or denied.
    This whole situation makes me want to channel some of Leo’s more volcanic tantrums.
    And it can’t be said enough, Charlie is lucky to have two loving parents who can be his teachers as well as his tireless advocates.

  2. Niksmom says:

    Like Shannon, I’ve been thinking about your situation so much. I think you got some sage advice from Joe on your last post as far as goal-setting. I suspect you are correct that this week’s will be the first of many meetings on the topic. My money is on you & Jim…and always on Charlie!
    I love seeing the pictures of Charlie out and about with you & Jim. Exactly as it should be. H-O-M-E.

  3. autismvox says:

    You guys are the best. I keep looking at that t-shirt, Shannon……
    Plan is to say “residential is off the table” and not waste time about why not. I have an agenda asking for full FBA and evaluations, have been emailing the district about various matters—like having the high-powered consultants who say that Charlie should be in Bancroft show up at the meeting with their reports, getting ready to contact former Lovaas consultant (and praying she has a tiny bit of time, probably not).
    I realize I earlier repeated back the district’s reasons for not doing an FBA–“unethical” to do it due to Charlie’s behaviors—I guess I have been wanting so badly that things would work out. But everything has devolved and now it is time to move on. [sigh, very big]
    Knowing you are out there makes all the difference. It will not just be Jim and me in the room.

  4. gretchen says:

    Keep swimming my friend- even against the tide!! We are all here with you. XOXO

  5. Club 166 says:

    Plan is to say “residential is off the table” and not waste time about why not.
    Just as it is wrong for them to come in and say that they want to send Charlie to a specific placement, it is also unfortunately wrong for you to say that something is “off the table”. So I would disagree with doing that, or at least be prepared for them to shut that down right away. They may throw a residential placement out there right off the bat just to upset you and throw you off your game from the get go. I think it is easier to get them to “stick to the rules” if you also do the same. I would not give them the opportunity to point out that they are just doing the same thing you are (jumping to placement without considering the other required steps in the IEP).
    Refusing to talk about other placements until a full FBA is done is very valid, and a good position to take. Behaviors need to be investigated for their causes and what they mean, not “managed” by locking someone up in an institution.
    One thing we have used in the past (to make us look like reasonable people, and keep the team focused on our son as a real human being) is to prepare a short folder on his “present level of functioning”. On the cover of the folder put an 8.5″ x 11″ picture of Charlie smiling and interacting at his best. Make copies of this folder for all the members of the team. Distribute the folder to all the members of the IEP at the beginning of the meeting. Then they have to look at Charlie’s smiling face the whole time, and think of him as a human being, and not a “problem to be solved”. Reference the folder at regular times (or at least hold the picture up once in a while when you are speaking). It’s a fairly simple maneuver that I think helps.
    I have also heard others get mileage out of preparing a short Powerpoint presentation regarding their child’s “Present level of functioning”. Insist that they let you make your short (5 minute) presentation, and insist that the presentation’s purpose is to “fill in the gaps” and to “help the IEP team understand “all of how Charlie functions on a day to day basis”. If they start arguing about letting you do it, remimd them that you are a member of the IEP team, this is part of your unique contribution to make to the whole picture from a perspective that others do not possess, and that you feel it is essential for the team to get a complete picture. After one or two objections, point out that you could have been halfway done with the presentation by that point. Include pictures of Charlie bike riding, eating out in restaurants, swimming. Keep repeating how he is consistently successful in all these other areas, and how the team should be investigating what are the conditions/triggers that are present currently that keep him from being successful. Remind them that a proper FBA is necessary to assist him in being successful in the LRE. Whenever possible, use positive words to describe Charlie, instead of negative.
    These are going to be **very** emotional meetings for you and Jim. You have to remain as detached as possible. Try to at least agree with Jim ahead of time to “take turns” responding emotionally, such that one sits back and observes the other side for problems while one of you is getting caught up (understandably) in the emotions of the moment. This is why I highly recommend getting an advocate to go with you. The advocate should preferably be someone who does this all the time and has dealt with the particular school system in the past. At the very least it should be a trusted savvy friend who can remain a bit more detached when they start lobbing grenades into the room. Having an advocate in the room gives you one more player “on your team”, which makes it look less lopsided when they start ganging up on you. Once I was in an IEP when they recommended that our son be placed in a classroom for emotionally disturbed children. It was a place where no learning took place, and restraints and seclusion were routinely used (my wife had been allowed to observe it one day). I responded that prisoners at GITMO were treated better than the students in this classroom. If we had not had an advocate present that day (actually, by that time we had both an advocate and a lawyer with us), the situation might have escalated, and they might have been able to steamroll us. Having an advocate allows you to sit back sometimes while they either take the lead for a couple of minutes, or at least stall by asking a couple of questions while you emotionally regroup.
    IEPs are part theater, part chess game (you need to lay out a game plan ahead of time, complete with options regarding possible responses when they make various objections and other moves), and part rugby (I’m not a rugby player, but the full contact mayhem that sometimes occurs reminds of the game).
    Still praying for you and your family.
    Joe

  6. autismvox says:

    Thank you, Joe. I like the folder idea much (and looks like I’ll have time to get some things together).
    I didn’t want to waste the (now postponed) meeting in relaying newspaper stories about Bancroft and having them say “that is just the media,” hence my wanting to focus on asking for a full FBA and evaluations. Am going to send an email tomorrow asking for the FBA by an independent evaluator (hopefully our old Lovaas consultant), evaluations (including neuropsych, speech, OT, physical therapy—-will work on getting the district to pay for these).
    Also, under FERPA, I am going to request to see and copy “any and all” documents in Charlie’s file.
    At the moment am advised by an advocate in MA who has a total grasp of IDEA and has been helping me prepare materials and memos.

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