After yesterday's lengthy tale (oh, fine--rant) the people who showed such amazing support--and those who brought up very valid points, even if they weren't entirely supportive--are owed an update. In case you have a life and thus don't make it to the end of this diary, let me start with a heart-felt thank you for all your support yesterday. You cannot know how much you bolstered me when it was most needed, or how much your support allowed me to be strong for a little 9-year-old who needed a solid adult at her side, and not a frightened mom. Things seem much brighter today, and even our Littlest is seeing glimmers of hope in her future. (Strangely, one of those glimmers is a mangy looking hamster who sprang halfway across its quite large cage to sink its little rodent fangs into her beloved big brother's finger. How weird is the world?)The county advocate was amazingly supportive even as she did her best to hide her obvious upset at the way the past few years have been handled. More on that below, if you'd like to know.
I'd also like to share a few other thoughts, but it will have to be in a future diary because I'm too emotionally drained right now to do them justice. In my emotional state, I seem to have convinced at least one poster, and presumably more than one reader, that kids--and by extension people--on the autistic spectrum are too alien to cope with. That is flatly untrue and I cannot tell you how much I regret having given that impression. But they are difficult to understand, because their gaps aren't uniform. The same child who can articulately explain in vivid detail how the reintroduction of wolves into Yellowstone affected the regional ecology (trout health, anyone?) is baffled when you tell her it's not acceptable to hiss at people when angry. "But... I didn't want to use derogatory words because they can be so hurtful." Or, of course, an otherwise bright child can fail to understand that the pretty thing your parents have been careful to describe your whole life as a tool so that you see it as such and respect it accordingly is, when mistakenly taken into school, a weapon that can end your life as you know it. (Possibly, maybe even probably, for the better, but we'll get to that.)
Another topic for discussion: the school managed to upset the snot out of me again yesterday, but I need to emphasize that they are not malicious, just making poor choices. Nor are they bad, uncaring people in general. A lot of the schools mentioned in yesterdays comments leave me breathless and appalled. Time out rooms? Tasers? My God, what have we come to? In this case, you have a group of well-meaning but ignorant (and I don't mean that in the pejorative fashion--they just don't know) people doing what they think they need to do to educate the kids under their charge while keeping them safe and trying to somehow, somehow deal with the horrible budget cuts our state has inflicted upon them. Let's talk about that, because we need to as a society. The Littlest's school's method was OH so clearly wrong. They didn't have to go the route they did over the past few years, and they hurt a little girl badly by doing so. But that's only part of the story, even if it doesn't seem that way to our family or to any others who are hurt so badly by their choices. The rest of it has to do with the way autism is portrayed in media, with the constant cut of badly needed resources to schools even as responsibilities and tasks and reams of paperwork are heaped upon them.
So, just as we arrived at the school to have the Littlest's hearing and vision test completed so they could kick her out, I got a call from the county person. I didn't know who she was, other than her name, but she turned out to be a special needs advocate/coordinator. She wanted to speak to us and was quite accommodating. I was unwilling to meet over the phone, so she offered to meet us anywhere, including our home, after some meetings. I said I'd rather meet at her office, and when she heard in my voice how upset I was, she canceled her meetings and said to come over once we were done at the school.
The school hustled us in and out as quickly as humanly possible, moving her immediately into a room, usually used as a storage area, where she couldn't be seen from any angle. The nurse was so rushed during her exams that she inadvertently snapped the headphones only the Littlest's neck hard enough to leave a red mark. I suppose, to be fair, it may not have been due to her hurry, but the rush can't have helped. After the very sort exams, they basically... kicked us out, refusing to even let the Littlest collect her things. The kids were at lunch, so the classroom would have been empty, but they clearly didn't want anyone to see her. I sort of understand that, but she was stunned. The contacted my husband later to complain that she still had textbooks. Well, duh. They're in her bookbag, which you just packed off with us. They could have said while we were there, if they weren't so desperate to get rid of us. Whatever. They forgot to have us sign something agreeing to her withdrawal, but apparently found a way around that, as TeacherHubby received a "your kid isn't registered here anymore" form in his email shortly thereafter. I'm not too upset about that because I really didn't want to go back. I do regret that the assistant principal who's always been so loving was not there, because I would have liked to say goodbye.
Off we went to the board of education building, with the Littlest shell-shocked in the back seat unwilling to speak beyond one complaint, about 1/2 way there, that her neck hurt. I was armed with all the knowledge this wonderful community had provided and ready to tell them I had a lawyer. My dad, who I wouldn't have used as he has no specialization in the field, but never mind that for now. I was hopping mad and ready to go protective predatory mammal mom on them. And that was the end of the bad part of the day.
The county person was kindness and light and support. Heck, there may have been puppies and rainbows, as warm an environment as we found her office. She opened by assuring me that my young miscreant would absolutely not be charged with a crime. Thank God. She does now have a police record that will stay in her file until she's 18, however, in case she does anything else. More than fair, I think. The Miss asked if she'd have to declare it on her college applications, which I thought was an odd, but sort of mature, question. She was assured that she would not, but that if she was so inclined, she might write about it to help make sure kids like her don't go through situations like this. My miss mulled that over for a bit and then gave a wordless nod I couldn't quite interpret.
The advocate was able to coax the Littlest to share her side of the past few years to a large extent, and when reliving painful memories became too much, she took her over to another special needs coordinator who got her to smile, and apparently spent the next hour letting Miss Little teach her all about her favorite animals and fashion using her office computer. She even gave the miss a homemade chocolate chip cookie as big as my hand--but thankfully not one of those puppies I mentioned above. :) She ended up with a small crowd who found her completely charming, with oddly earnest delivery and quaintly formal manners.
While she was in there, the advocate and I spoke at length. She was at least angry, if not furious, at the lack of an IEP, especially when told of the "academics are fine" reason. She was visibly upset when she went into the Little's records and found a near-complete lack of documentation of everything including her gazillion suspension days, which were just marked as "absence," or the myriad times she'd been sent to the principal for running off or hiding under her desk. There was no record of the paperwork we'd provided from multiple doctors on her diagnosis, and no indication of the many many times everyone had acknowledged that it was unquestionably accurate. Nor was there any sign of the dozens of times we'd asked for an IEP. But she did some diligent sleuthing while I looked over her shoulder and manged to put together plenty of evidence to support our daughter's special needs finding. That's important, because her spot in this program is only a 60-day temporary placement while they decide whether she qualifies for special needs. So, what happens after the 60 days if they, due to the lack of documentation, decide she doesn't qualify? We'll never know, because over the years, they entered just enough data in aggregate for her to qualify, according to the advocate. Not to mention, I have emails from back in her 1st grade year asking for an IEP evaluation. I forwarded 10 separate requests for an IEP over the years to the advocate today, so I think we're pretty much covered, especially as it turns out that they were required to help at that point I asked in writing. Back in 2011, we asked for the following, in my opinion reasonable, accommodations, which would have helped prevent so much:
Assigning her a safe place to go when she's upset, possibly the library since she likes books so much.They were never followed despite repeated requests over the years.
Decreasing her unstructured time as much as possible: specifically having her walk at the head or the back of the line during transition times, or even having her make transitions away from the rest of the class.
Having the guarantee that if she goes to an adult to say that she's having difficulty, she will be listened to. When she characterizes her upset as "annoyance," what she means that she's at the limit of what she can cope with. I'll try to work with her on coming up with a different term for that.
The advocate even gave us tips to get the very minor modifications that would help her older brother, which I thought was wonderfully kind.
Anyway. The new program seems to be carefully tailored rather than lock-them-in-a-dark-room-and-forget they exist. Three of the kids are also in the gifted program. She gets to study to the level of her ability, but has to demonstrate mastery of the 3rd grade curriculum first. As the only 3rd grader, she'll basically be getting one-on-one instruction, which she'll thrive on. The plan is to teach her how to negotiate the social signals around her and get her back in a mainstream classroom by 5th grade. I have my doubts that the program will work well for her--it's the transitions she struggles with, not the classroom. The walls are blank because the kids tear at them sometimes, yes, but also because it's less distracting that way. The head teacher has three autistic children of her own, so she really gets them. It's a heck of a commute for a little girl, but I think the program, now that it's peopled in my mind rather than just a tiny bleak room, sounds like it might be ok--or even good.
So, thank you, thank you, thank you all for your help yesterday. For your full-throated support, for your defense of my family, for talking me off the cliff I felt I was on. For caring about your fellow humans, even when they're odd. For taking the time to read. For, well, I guess what I really want to say is thank you for being you.
Sun Nov 17, 2013 at 3:50 AM PT: I doubt anyone will read this, but I'd still like to apologize for disappearing yesterday. I try to read and respond at least acknowledge all comments, but I ended up calling a fellow Kossack and talking for...far too long. Then we needed to go get the little miss new school supplies, but she started crying and couldn't stop, so that was my duty yesterday. Better late than never, though, just like with thank you notes, so I'm reading through now.