Well, actually, it might be better...
After calming down somewhat and doing a bit of research, it seems that there's a very good "high needs" type school fairly near to us. They have excellent facilities (including a pool!) and offer integration programs with a local primary school. It is a school for children with multiple disabilities, but they certainly take autistics, as well.
So, well, if Zoë ends up testing as more low-functioning than I know she can do, it'll be all right. The school she'd be going to is actually better than the other two choices, IMHO (it's closer, it's got nicer facilities, it's purpose-built, it's got good programs, etc.).
I've seen Zoë do remarkable things, including fairly complex building, working a computer mouse (she has a paint program she uses quite well), using the remote control to navigate the special features on a DVD, and putting together complex puzzles very quickly. If she's got any sort of visual cue to tell her how something works or what she needs to do, she's able to figure it out.
The biggest problem is that she gets so very tense and upset in some unfamiliar settings, and she gets distracted quite easily. But, since a good portion of an IQ/developmental test is actually how well the subject can comply with the tests, she may score lower. This is one of the problems of autism. There's a bright little mind in there, and she understands a good deal more than people might think, but unlocking that can be difficult, at times...
Formal assessments
Well. Whew. Bit of a stressful afternoon.
We went to meet with the psychologist to talk about Zoë's formal IQ/developmental assessment, and it was quite the ordeal for Zoë. She was okay at first, but got more and more upset as the meeting went on. It was in an unfamiliar office of a familiar place, which was the first thing that was "weird" for her.
Then, it was with someone she'd never met before. Then, there were lots of toys and cool things and Zoë wanted to touch and play with every single one of them, and explore every nook and cranny (which is pretty normal Zoë attitude right there). When it became clear to her that she wasn't going to be able to touch everything and handle everything, and she was told "no" several times and eventually physically prevented from climbing on chairs to get things down, etc., she just got more and more upset.
The issue here is that she may test VERY low on a formal IQ test. Today, she was very "low functioning". She's certainly not always like that, and she can be compliant and helpuful and she's quite clever about many things (for example, she can use the mouse to do point and click flood fill coloring in a particular paint program she has). If she scores very low, however (below 50), she won't be eligible for the school we have in mind, and will have to go to a school specially geared for very impaired children. Ugh.
I mean, if that's what has to happen, well, okay, and we can transfer her at some point when she's had more therapy and is more able to be in a "higher" level school. But it is kind of distressing to me, because I know she's quite clever in many ways, and I don't know that she'd be able to exercise that in a setting designed for kids with much lower intelligence.
But on the other hand, if she can't sit still and won't cooperate, she wouldn't do well in any other setting, either.
Well, I guess all we can do is see how the assessment goes and make plans from there...
Bad behavior and chocolate?
For the past three days, Zoë has been a real little pain in the neck. Very out of sorts, unsettled, uncooperative.
The only thing that has changed is that she's been consuming a lot more chocolate than we normally allow her. Around Easter time she got like this, too, and at that time we thought it was possibly the amount of chocolate she'd had (from preschool Easter parties, Early Intervention, etc.). We took her off of chocolate completely for a couple of weeks and she settled down, and then we slowly reintroduced it and she seemed to handle it okay, so long as it's only in small, infrequent amounts.
Given that both of her uncles were allergic to chocolate as children, and the fact that lately she's been having hot chocolate fairly regularly in the evenings, I'd say we might be looking at a problem with chocolate tolerence. Therefore, we'll take her off of it completely for a while and see how that goes, and if her behavior improves.
Honestly, though, with Zoë it's always fairly hit or miss. You take a look at the situation and try to make a good guess as to what the problem might be, and act accordingly. Sometimes, you guess correctly. Sometimes, you don't...
Just a good link
RxPg News: Autism
We love you but....
I had the great misfortune of encountering a fringe group of parents of autistic children whose hatefulness and bitterness really made me kinda sick and very upset. These are parents who believe that autism is something that can be and should be "cured", or, in my estimation, exorcised like a demon.
I saw people ranting about how horrible it is and how it should be eradicated and such, and some of these people are actually putting their children through medically questionable and potentially dangerous - even fatal - procedures in an effort to "cure" their children.
Now... I DO get that autism is a disability, and it certainly can be frustrating, depressing, and a lot of other things. But basically, I believe that in almost all cases (I think there are probably exceptions, such as certain kinds of food allergies and the like), it's just the way someone's brain is made. There have been studies that show that autistic people's brains really function differently, and that areas which normally work together in a neurotypical person, work separately in an autistic. This leads to difficulties in many areas, yes, but it can also mean advantages in other areas.
There are some very rich, self-made, and famous people who are notably autistic; being on the Autism Spectrum does NOT have to mean the end of all hope or anything of the sort. Like any disability, it makes things harder in some ways, but overcoming those things is part of what can build strong character and produce a unique individual. (And yes, a lot depends on the person and the degree of their autism, of course, but I just don't believe that an AS diagnosis has to be a tragedy.)
Totally beyond that, I believe that parents who hate their child's basic identity - and autism does define a child's identity to at least some degree - are sending a really bad message to the child. They're saying, "We love you, but we'd love you more if you were normal, if you were like everyone else, if you didn't have these difficulties."
It really upsets me, and I ache for the children of parents who so despise some aspect of their child, parents who, instead of teaching a child that they are loved and cherished for who they are, teach the child that they'd be ever-so-much better if they were just like everyone else, when the child obviously is NOT like everyone else, and can almost certainly never be, because they're just plain different. Different is bad. You are different. Therefore, you are bad.
Not in our household, I'll tell you that. Aside from the fact that this family is quite full of eccentrics of all sorts (myself, included), I strongly believe that a child should be loved for who they are, warts and all. Yes, work to improve their bad behavior, to help them with their difficulties, get the therapy and special schooling and whatever it takes to enable them to cope with their problems, absolutely. But they are who they are, and they should be loved for who they are, and not for who they might have been.
Very good day
Yesterday, Zoë wouldn't eat breakfast and for various reasons, I ended up not taking her to her early intervention session (partly we would arrive late and have to leave early, long story). At home, she wasn't allowed any television at all, and I made it very clear to her that little girls who don't eat their breakfast (which she did ask for, just for the record) don't get special privileges.
Today, she ate her breakfast, or at least made the attempt. I told her to eat at least two bites of her cereal, and she did that, two good big bites. So either she learned from yesterday or she was just more willing to cooperate today, I'm not sure.
The melatonin isn't making her go to sleep any earlier, but it seems to be greatly improving the quality of her sleep. She's been on it for four nights now and for the first two she didn't have to get up the next day so she slept late, a full hour longer than she normally would. The past couple of days she's been getting up early, but she seems to be in very good form (well, other than refusing to eat breakfast yesterday, which could have been for any number of reasons, including just plain willfulness).
Her teacher asked today if Zoë had gotten an early night, because Zoë was in such a good mood and so willing to go along with expectations and do things that were asked of her. Well, she didn't have a particularly early night, but I believe the quality of sleep has improved enough that while she's still sleeping about the same amount as before (ten hours, generally speaking, although over the weekend she had those extra hours in the morning sleep-in), she's sleeping better, and it shows.
And I'm happy to report that for the past couple of hours she's been very happily and nicely playing at the table with Legos. No fighting with her sister, no rummanging around in cupboards, no mischief. Just playing nicely.
And what a relief that is.
Okay, finally an update...
I've been remiss in writing in this journal, not because I don't have lots to say about Zoë, but because I've just been busy and distracted. But today I'm doing an update, yay!
Zoë's doing quite well, generally speaking. Her tantrums are greatly improved, and really only happen when she's tired, hungry, or both. She DOES still get very stubborn and sometime refuse to do things, etc., but lately when she does have a little meltdown, she's able to recover from it much more quickly. She's getting better at taking "no" for an answer, and she's getting much better at being able to kind of get herself together and calm down. It used to take ages for her to recover; now it takes only a few minutes.
Her comprehension has improved vastly, and she can follow simple directions like "Get me a bowl from the cupboard," or "Get me an egg from the fridge."
Her speech is still fairly limited, but it's improving, as well. The other day her grandfather was drinking tomato juice and gave some to Miranda. He said to Zoë, "Do you want to taste this juice?" Zoë responded, "No. It's tomato." She's using other simple sentences now and then, much to our surprise. When Miranda accidentally stepped on Zoë's hand, Zoë said, "Oww!" and cried a bit and when I asked what was wrong, she said, "Awanda foot hand," (Miranda put her foot on my hand). Her use of words is still idiosyncratic, but it's creative and original, and that's a really good sign in language development.
She's also eating much better. We've had a terrible time getting her to eat regularly, but with concentrated effort, we've seen big improvements. She's still a little picky about what she'll eat, but she's been willing to try new things (even if she doesn't eat them) and she's been eating much more regularly, which is a big relief.
Her sleep is still an issue. Getting her to bed has always been a battle. Lots of up and down, in and out of bed, etc. We've tried all kinds of behavior modification things, and some will work once or twice, but when the novelty wears off, she's right back to not sleeping (thankfully, once she falls asleep, she's generally asleep all night, which is an improvement over earlier years, when she was prone to waking, night terrors, etc.). Sleep disturbances aren't usually listed as a sign of autism, but it seems that a lot of autistic children have them...
Anyway, we've recently tried her on melatonin, which is a natural hormone which seems to be out of balance in autistic persons, and which aids sleep (I'll post a few links at the end of this in case you want to research on your own). I heard about it on an autism list I belong to, and thought we'd try it. We used it last night and it didn't help much in getting her to bed, but she seemed to sleep very deeply and she slept fairly late, which may or may not be related. Tonight we'll increase the dosage and give it somewhat earlier, and we'll see how that goes.
Generally speaking, there have been big improvements in Zoë's behavior and speech and other areas. This is a good thing, and it's definitely a relief.
We still haven't gotten the appointment for her developmental/mental assessment. Thankfully, we found out from the school that while the "official" date for registration, etc., is in July, the actual date when people usually get everything there is much later, so it's fairly flexible. We still don't know which school she'll be going to, and won't until she gets tested. It's a bit frustrating, to say the lest.
And now those links:
http://www.udaan.org/drugs/autrx2.html
http://www.autism.org/melatonin.html
http://www.autisticsociety.org/autism-article552.html
Google Search for melatonin autism
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