54. Not Gonna Be Nickeled & Dimed

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Thanks so so much—more than I can say—for your concern for Charlie and your support. I think families often feel alone and isolated when they get into these kinds of
conflicts with school districts. Certainly the districts want to make you feel that you are being The Difficult Pain in the A** Parents and why can't you just be like that nice, agreeable family who's so grateful for all they're getting from the district? 

Friday afternoon, Charlie's teacher emailed that another incident report has already been filed; she didn't mention specifics (she wrote about a "rough patch"). O where o where is the high-powered autism consultant? It would be well for her, and for the school district, to figure out why this sort of things keeps happening, by doing a Functional Behavior Analysis. Jim and I had his former ABA/Lovaas consultant observe him during summer school. And I have repeatedly sent Charlie's teacher and other school personnel and administrators links to my writing about Charlie, and Jim's and my understanding about we have been able to help him be "peaceful easy-feeling." We're just parents, though—I'm "mom," as a school speech therapist wrote in her evaluation—and people, and school districts (and their lawyers), make their own decisions about how they will proceed.  

We have a meeting scheduled with the district for the 25th of September, next Friday. We are still seeking an emergency meeting ASAP with the school district (who seems to be unable to schedule anything unless a specific case manager is around). 

In the midst of this intense ridiculous ridiculousness—including a letter from the Special Education Director asking me where was the $9.75 the Board of Education charged us to get xeroxes of Charlie's file (I reviewed our bank records and saw that our cheque for the $9.75 was deposited by the district on the 3rd of September)—Charlie has been a trooper. Friday I picked him up early from school. He's constantly shadowed at school by at least two aides/teachers, one of whom is always a guy, and they were standing beside him when I walked into the school office. I removed his helmet, wished everyone a good weekend, and 5-foot-tall me walked out with 5-foot-6-1/2-inch-tall Charlie behind me. (He looks like he might be one of the taller kids in the school, period…..he's basically the same height as many teachers and staff there, including the Assistant Principal with the walkie-talkie/phone permanently in his back pocket.) 

Charlie had a (Child Study Team paid for) neuropsychological/educational evaluations and, after a balky start, it went well (though not too much actual testing was done of him). Jim and I discussed our concerns about the school district and Charlie's placement. As the doctor's office was in the same town as the nursing home where Jim's mother has been since the summer, we went to see her. She is in a private room near the nursing station so there is fair amount of hustle and bustle outside her door, but it's very quiet in her room, aside from the drone of the TV. She has lost her sight in one eye. I don't think she ever leaves the room: She is just lying there; she never was one too walk much (she had knee replacement surgery a few years ago, but already had trouble getting herself into motion before that). Charlie always walks up to the foot of her bed and says "Hi Granma, hi Granma" several times, and Jim sits down beside her to talk, though her sense of things fades in and out. (Friday afternoon, she talked about Jim being a priest.) "I want to go where you're going," she said.

Jim sat with her for some time, while Charlie and I went back to the car. After Jim came back, I asked him if we might try to get his mom in a wheelchair and sit with her outside in front of the nursing home—I mean, she's been in that same room for weeks and weeks and weeks. I guess it's the native California in me: I always think sunlight and fresh air can make a difference, even a little one. I know it's not possible, but I wish we could take to see the ocean once more. The beach where we go is where Jim and his family vacationed when he was little and, while they didn't have quite the tight team o' three togetherness that he and Charlie and I do, Jim and his mom always loved being there. I know that, as much as she'd like to get up and leave, just getting her into a wheelchair is going to be a major challenge.

Jim and I always more than heartened to see how eager Charlie is to see his grandmother. Charlie has spent a lot of time with her. We moved back to New Jersey in 2001 and saw Jim's parents almost every weekend until we moved into their house in June of 2006, so Charlie could start going to school in the town they'd lived in for 30 years. The autism program that Charlie's in is a newcomer to the district (and showing signs of growing pains, possibly severe?)

We can't let kids like Charlie be nickeled and dimed. We can't let them, or their families, be made to feel isolated and that we're the "problem" ruining the school district's excellent ratings as noted by the likes of Newsweek. I've been wanting to look more closely at the problems and politics of public school autism programs. I guess I'm going to be getting my chance, and then some.

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Comments
20 Responses to “54. Not Gonna Be Nickeled & Dimed”
  1. farmwifetwo says:

    Oh yes, the “you’re just the parent”… Our school has learned a few things over the years and this year – new VP, new to the school Teacher’s – they may have finally learned.
    1. SAHM’s are NOT white trash and probably have more Post Secondary Education than you do. And more “political” cards to play.
    2. I don’t care about the “other children that need help”. Mine has paperwork and lots of it, if those parents wish to fight for services, get the paperwork done… they’d get the services too.. I’m not sharing mine.
    Good luck with “being the parent” ::eye-roll::

  2. Niksmom says:

    Wait, do I understand that the speech therapist addressed you as “mom” in her report? I would ask that it be amended/corrected and politely inform her that “My name is…, please use it.” It sounds like a nit-pick but it really does level the psychological playing field if staff gets used to addressing you as the individual you are rather than lumping you in with their generic perception of “mom.”
    I hope you are able to get Jiim’s mother outside in a wheelchair; I agree it might do a world of good.
    Keeping positive thoughts for your meeting next week.

  3. Emily says:

    I *hate* it when people refer to me as “Mom” either in person or in reports, rather than calling me by my name or saying “his mother.” My name is Emily, not “mom.”
    Nickeled and dimed? The Special Ed direction has no better way to spend time than to dun you for chump change that you’ve already paid? Obviously, they’re looking for ways to harass you. Um…doesn’t that special ed director have some special ed-related duties that could have benefited from that time and energy?
    Whenever I start to feel like “that woman” or “that parent,” you know, the one who makes all the trouble, I remind myself of the Hardy quote I have on my blog and of Galatians 6:9 (you don’t have to be religious to appreciate the latter):
    She was the stuff of which great men’s mothers are made. She was indispensable to high generation, hated at tea parties, feared in shops, and loved at crises.–Hardy, Far From the Madding Crowd
    ——
    Gal 6:9: Let us not be weary in well doing for in due course we shall reap if we faint not.
    ——-
    Go get ’em.

  4. karen says:

    You remain in my thoughts, Kristina. I have a feeling you are blazing a new trail. I’m sorry it’s so difficult. Keeping you and Jim and Charlie in my prayers, too, that this can be resolved and Charlie can have peaceful easy feeling at school soon. xo

  5. karen says:

    You remain in my thoughts, Kristina. I have a feeling you are blazing a new trail. I’m sorry it’s so difficult. Keeping you and Jim and Charlie in my prayers, too, that this can be resolved and Charlie can have peaceful easy feeling at school soon. xo

  6. Emma says:

    I really can’t believe the amount of negativity and manipulative behaviour that is being thrown at you from the school and their higher powers – there goes my looking to other countries with wide eyed wonder.
    I have no advice to offer, just some virtual-world support. Hope you find some solutions soon.

  7. autismviile says:

    Sunshine and fresh air do help… always.

  8. It is amazing that they leave the helmet on Charlie while in the office as you are coming to pick him up – how degrading.
    I see more CA schools in that Newsweek list than NJ.
    I think the shore would be great for Jim’s Mom
    Good luck in meeting on the 25th

  9. MATeacher says:

    Best of luck. It definitely sounds like it is time for a new placement (one that will respect Charlie.)
    Unfortunately, it doesn’t sound like you will have too much of a fight on that if you can only find the right one….

  10. MATeacher says:

    Best of luck. It definitely sounds like it is time for a new placement (one that will respect Charlie.)
    Unfortunately, it doesn’t sound like you will have too much of a fight on that if you can only find the right one….

  11. autismvox says:

    Thank you—there are not too many options for Charlie, unfortunately. I think we’re hoping first to just get him settled somewhere and keep working on things at home, where we can.
    @Emily, I love Thomas Hardy and Far from the Madding Crowd was the first of his novels that I read. The special ed director went to all of the trouble to send an actual letter, even…..
    Yes, the “mom” thing really irked me. It was kind of odd as the therapist referred to me elsewhere by my name in the report. What was most frustrating was that she did not mention the two concerns I outlined to her: 1) Connection between Charlie’s behaviors and communication; 2) AAC, which I spoke about to her at some length.
    Working on minimizing negativity in me—why join them in that bad game!

  12. Club 166 says:

    When I was in some of our more “confrontational” IEP meetings, they would often try to minimize our contributions to the proceedings as coming from “just the parents”. I quickly (and pointedly) reminded them that we had more contact hours with our son than any of them had ever had, or ever would. That we had years of experience with him that they could not match, and that *we* were the ultimate experts on our son’s behavior, abilities, and personality. They harumphed a bit, but settled down after that.
    Unfortunately, the three of you are in for a nasty time. You remain in my thoughts and prayers.
    Joe

  13. Jen says:

    Whoa! Wait a minute, this has been going on for some time without an FBA? I read this earlier and I think I missed that one. If I were going to recommend that a person be restrained, and wear a helmet, I would certainly want to have done an FBA.
    Another thing we did to cover our own behinds where I used to work, not sure if they do it there, but in this case, I make the suggestion because it would increase the effort involved in doing a restraint, was to have the nurse do a body check after the restraint. If they aren’t doing it already, someone really needs to make sure he isn’t being injured in the process.

  14. Jen says:

    Whoa! Wait a minute, this has been going on for some time without an FBA? I read this earlier and I think I missed that one. If I were going to recommend that a person be restrained, and wear a helmet, I would certainly want to have done an FBA.
    Another thing we did to cover our own behinds where I used to work, not sure if they do it there, but in this case, I make the suggestion because it would increase the effort involved in doing a restraint, was to have the nurse do a body check after the restraint. If they aren’t doing it already, someone really needs to make sure he isn’t being injured in the process.

  15. Jasmine says:

    Kristina,
    Perhaps you are beyond this given the seriousness of the situation, but have you considered Mediation through NJ’s Dept of Education? I remember not too long ago that this was a wonderful placement for Charlie, and it would be wonderful if you could somehow go back to that place where everything was peaceful easy feeling and Charlie was thriving …

  16. mamacate says:

    I remember a John Stewart piece which he titled “Be a F-ing Person.” I think of that sometimes in our situation where there’s just clear-cut game-playing going on (like the 7-hour negotiation with no food). Anyway, the copying fee made me think of that phrase. Sigh.
    I respect your efforts to stay above the fray, but remember that they may be fighting dirty.
    And I know that advice-giving it not always helpful, but as Jen said, if they’re doing all this without an FBA, you’ve got a clear-cut denial of FAPE going on. I think sometimes they just write our kids off (which seems to coincide with when they start being scared of them). Is there a new team you could access that could find a fresh start with him? We got nowhere, it seemed, until we had new people running the show who knew what they were doing and had a philosophy about human rights to boot. We spent a year trying to bring the old team back from that place of fear and giving up, and in retrospect it feels like wasted time. YMMV, as always.

  17. mamacate says:

    I remember a John Stewart piece which he titled “Be a F-ing Person.” I think of that sometimes in our situation where there’s just clear-cut game-playing going on (like the 7-hour negotiation with no food). Anyway, the copying fee made me think of that phrase. Sigh.
    I respect your efforts to stay above the fray, but remember that they may be fighting dirty.
    And I know that advice-giving it not always helpful, but as Jen said, if they’re doing all this without an FBA, you’ve got a clear-cut denial of FAPE going on. I think sometimes they just write our kids off (which seems to coincide with when they start being scared of them). Is there a new team you could access that could find a fresh start with him? We got nowhere, it seemed, until we had new people running the show who knew what they were doing and had a philosophy about human rights to boot. We spent a year trying to bring the old team back from that place of fear and giving up, and in retrospect it feels like wasted time. YMMV, as always.

  18. autismvox says:

    @Jasmine, I have thought of that, mediation…..working a bit behind the scenes on things for Charlie if you know what I mean!

  19. autismvox says:

    @Jasmine, I have thought of that, mediation…..working a bit behind the scenes on things for Charlie if you know what I mean!

  20. Regina says:

    “—including a letter from the Special Education Director asking me where was the $9.75 the Board of Education charged us to get xeroxes of Charlie’s file (I reviewed our bank records and saw that our cheque for the $9.75 was deposited by the district on the 3rd of September)”
    “What was most frustrating was that she did not mention the two concerns I outlined to her: 1) Connection between Charlie’s behaviors and communication; 2) AAC, which I spoke about to her at some length.”
    Well, nice to see that the focus is on what really matters [sarcasm]. Geez.
    Daily “takedowns” for semi-/unspecified “rough patches”, without an FBA having been done (yet)?
    I’m boggled and disgusted. Something needs to happen because this seems to be settling into a very disturbing routine with eyebrow raising elements. I just wish that you didn’t have to delay until the 25th for that meeting.

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