More talking
Zoë's very much in the habit of saying, "You all right, Zoë?" when she falls. She also will say, "Careful," usually when she's almost spilled something (that's when her dad says it, you see).
Today, I was looking in the pantry and I asked her what she wanted. The way that works is to offer things and she says "No" to the ones she doesn't want. I got to bran muffins and she said, "Nice." I said, "It's nice?" and she answered, "Good nice."
Not quite "yes," but I got the idea. She also sometimes says, "Okay," when we get to the thing she wants, but so far she hasn't settled on an affirmative word.
Not very polite, but...
School started again today and Zoë was thrilled to be back. She had a really good day. The teachers even seemed a little surprised at her cooperativeness and how happy she was today. She really is improving all the time.
Just now I asked her if she wanted clean pants (she was wearing a pullup, and it was wet). She trotted in to the changing area and removed her own pullup (yay!) and then I said, "Let me just have a look at your bottom," and she said, "I farted."
I said, "You farted?" and she wrinkled up her nose and made a face, and touched her nose.
Now, I didn't know she'd even been paying attention when we said that to her or used that word, but I guess she was. And while I'm not entirely sure that she fully understands all of it, she definitely knows it stinks (hence the face) and that it's associated with her bottom.
So there you go. No, it's not a very polite word, but there are worse words, and the big thing here is that she's actually voluntarily communicating, regardless of how impolite the word is.
Owie
Just now I slipped (on what I have no idea) and fell as I carried in a drink for Zoë. I whacked my knee pretty hard and wrenched my lower back and I was pretty noisy about it, saying, "Ow, ow, ow, ow."
Poor Zoë was very upset by this. She saw me fall and started to cry and kept saying, "Sorry! Sorry!" because that's what we say to her when we bump her or step on her or any of those other things that happen to children who get underfoot. Then she started saying, "Ow ow ow ow!" because that's what I was saying. I kept telling her it was okay, but she didn't believe me until I finally got up and moved around (with a limp, but she doesn't understand things like that). I called her to me and gave her a hug and told her that I was okay.
She said, "You all right?" (again, this is what we ask her when she's hurt) and I said, "Mama's all right. I just have an owie," and she said, "You all right, owie?"
I did get her another drink, and that seemed to help. I'm not sure if it was me falling, me making noise, or me spilling her drink that had her upset. Probably all three.
EEG
Zoë had her EEG today. It's a bit of a long story, but to condense it somewhat, they accidentally scheduled her for a non-sedated EEG. They were able to reschedule a sedated one for today, but because of their error they agreed to charge the Medicare price only, saving us about $80 that would have come out of pocket.
Zoë asked to use the potty today when she was out. She said, "Do goppy, poo poo poo poo." She didn't actually do a poo, but she did make the effort and she had a little bit of a movement. This is an excellent sign. She's apparently becoming more aware of this sort of thing. (Later, at home, she did do a poo on the potty, but she didn't ask to go; we recognized her body language).
As for the test, they gave her the sedative in a drink form and then she proceeded to fight sleep for about forty-five minutes. She was staggering around like she was drunk, poor kid, because she wouldn't keep still. After half an hour, they got her to lie down and put the electrode "hat" on her, which annoyed her because she wanted to touch it and take it off to look at it, and couldn't. Eventually, she did fall asleep for about half an hour and they got the testing they needed.
The results of the test have to be analyzed before we know if anything's going on with her brain impulses (they're looking for lobe seizures, which can be treated pretty simply with medication).
Tonight, she's pretty cranky. She's very contrary and she looks really tired (she did get up early). I suspect she'll be falling asleep on the couch in a little while. Right now she's lying down, watching The Simpsons...
Talking more and more
Zoë's been talking more lately. She chatters frequently (it must be fairy language, because we generally can't understand any of it), but she's also using recognizable words more often. She's taken to repeating us when we say things, and she seems to be repeating in a meaningful way, in that she's trying to say the word(s) herself. Tonight she said "group hug" and "cooking" and "yes" in context.
And... she's started pointing! She's never pointed to things to show them to anyone, and this is one of the things they look for in autistic spectrum children (pointing is a very early communication skill). Tonight we were in the kitchen and her dinner of fish and chips was in the oven cooking. I lifted her up to see that and then I turned and stirred the grown-ups dinner, which was in the slow cooker. Zoë came over and pointed to the slow cooker. She wanted to see inside it.
Later, she pointed to the television when a little girl in a musical commercial came on. I'm not sure what she was trying to say. Maybe just, "There's a little girl," or "I know this commercial," or something of that sort.
Her potty training is getting back on track. She's still not telling us when she needs to go, but she's able to say when she doesn't need to go, and she's able to say when she's finished going. If we pick up on the body language when she needs to go and we get her on the potty, she cries a little at first but then settles down to the task at hand. She hasn't had a big accident for over a week now.
Finally, today her great-great Auntie and Uncle came by to pick up something and she was very sweet to them. She didn't want to give hugs or kisses, but she was happy to blow kisses to them.
Wednesday is her EEG. Fingers crossed that it's not so traumatic that she gets all bent out of shape again. I don't think it will be. There's no pain involved, and she'll be sedated for it. It's not invasive at all, just kinda weird. I think she'll do all right.
Big steps forward!
Yesterday, I went to change Zoë's nappy and I asked her if she needed to do a poo on the potty. She started to cry. I told her not to cry, to just say yes or no. She said, "No." I said, "Okay, then." Then she wiggled her hand at me (obviously trying to make the "finished" sign, which we've been using with her) and said what she says when she finishes on the potty: "All done."
She's really starting to understand about communication. Yay! It's hard for her, but she's starting to really GET it. Whew.
Then, at dinner, she actually tried a new food!!! We went to dinner at T.G.I.Friday's since it's payday and we didn't go out for our anniversary, and we had spicy hot chicken wings (Buffalo style wings) as an appetizer. Zoë asked for one, and I gave it to her, thinking she wouldn't eat it, but she did! She methodically gnawed all the chicken off the bones and everything. I was so surprised!
And then with her dinner, which was chicken fingers, french fries, and apple wedges, I actually persuaded her to try some of the apple wedge, something she'd always refused in the past. This time she refused at first but I persisted, and she took a teeny little nibble and... liked it. She then took a bite out of each of the four wedges as she went on with her meal.
We praised her all up and down for this, for trying new food. And we stopped and got some apples from the grocery store on the way home, since Miranda likes them, too.
It's too early to make predictions, but maybe, possibly, Zoë might be starting to outgrow her terribly restricted eating patterns. We can hope, anyway.
Good news on that blood test
The doctor says we don't need to get that thyroid test done just yet. We'll get all the rest of the other tests and only do the thyroid if everything else turns up negative and we need to absolutely rule out thyroid dysfunction. So, no more blood draws unless absolutely necessary. Whew.
Back on track (I hope)
Saturday, I managed to get Zoë to use the potty. She had just started to go in her pants, and I noticed and got her on the potty as quickly as possible. She complained about sitting on the potty, but she got the job done and then we made a huge production of what a good girl she was to do a poo on the potty instead of her pants.
Yesterday, she didn't do a poo at all, and so far today she hasn't needed to go, so we'll see. I hope that we can slowly convince her to use the potty again. She was doing really, really well for a while there, actually asking to go, or taking off her pants and heading that direction. Then suddenly she didn't want to go any more.
Well, I'll be keeping a close watch on her at any rate. With any luck, I'll be able to steer her back in the direction of being a big girl.
According to some autism information I've read, late potty training is pretty typical, and some even recommend waiting until the child is four to four and a half to even begin. I think Zoë's not quite as impaired as that, though. I do think she can probably handle the bowel training. She's been doing fairly well with it for months, until this recent setback.
I also read that it's not uncommon for an autism spectrum disorder child to have setbacks with toilet training. Change can upset them, as can other events. Zoë's great-grandfather, whom she was used to seeing daily, has gone away for a holiday (she keeps looking for him and seems perplexed that he's not where he's supposed to be) and last week she had that blood draw, which I suspect was fairly scary for her. That day she climbed into bed with me to have a nap and she slept with me and her little sister, which is not at all usual for her. Thta's also the day she started going in her pants again, so perhaps it's related. Perhaps not. I don't know. I can't always fathom what goes on in her little brain, poor kid.
It's hard being a little fairy in this big, confusing world.
Potty!
Well, it seems Zoë is getting back on track with using the potty. Tonight she came over to me and stood next to me as she started to grunt a bit, her way of indicating she needed to use the potty. We put her on and she did her poo and it was fine. Let's hope it lasts.
Got a call from the laboratory today, though. There wasn't enough blood to complete all of Zoë's tests, unfortunately. They didn't get to do the thyroid test. When I told the technician how traumatized Zoë had been by it (putting her potty training off, sleeping with me during the day, sleeping so poorly at night that she missed school the next day), she suggested we call the doctor and check to see if it was really necessary. I suspect strongly that it is, in which case we'll just have to take Zoë back to get more blood drawn, but we can at least ask.
We've got the appointments for the hearing test and for the psychologist's assesment, as well. Speech therapist said she'd arrange testing with the doctor, which is good. Then we've got the EEG to get out of the way.
Poor little kid, all these weird tests and pokes and prods and strange people looking her over. Small wonder she's not sleeping well.
Potty troubles
I have no idea why, but Zoë seems to have completely foregone all previous potty training. She just plain refuses to let anyone know when she needs to use the potty. She used to ask, even saying, "Go potty". She's been known to remove her clothes from the waist down to indicate that she'd like to go. She knows perfectly well where the potty is, where her potty seat is (it fits into the big potty; she used to like to put it on herself). But for the past week or so, she just refuses all of that and goes in her pants.
I'm completely at a loss as to how to deal with her. I get that she doesn't understand or use language well, but she's extremely expressive with her body language, and I know perfectly well that if she wanted to, she COULD indicate when she needs to go. She seems to have just stubbornly decided never to use the toilet again.
She's on the potty right now because when I changed her it seemed she needed to do some more. She sobbed for a good ten minutes about having to sit there. Now she's settled down, thankfully.
Some days I think she's making great progress (and she is making slow progress). Some days, though, I just wonder what's going on in her head. This constant backsliding to previous developmental stages is really, really frustrating.
I just hope we can get her into an early intervention program very soon. I think it'll help in all areas, including this one. I hope so, anyway.
Zoë's Week
Well, the little girl's week has been an odd one. Monday was the blood draw, after which she actually lay down with me (and her baby sister) to have a nap, something she hasn't done since she was a baby. That should have been a clue to me that she was pretty upset, but I didn't pick up on it at the time.
Monday night the poor kid slept very fitfully. She was awake off and on all night as far as I could tell. I kept hearing her in her bed, chattering, singing, talking, crying very quietly. Experience has taught me that unless she's really crying hard and calling for a parent, it's best to leave her be because she'll settle herself down. If we go in, it just prolongs the time until she gets back to sleep.
However, when morning rolled around and I went to wake her for school, she was, not surprisingly, very cranky. She wouldn't eat, didn't want to get dressed, didn't want to sit down, basically she was just plain miserable and crying and on the verge of a tantrum all the time. We decided to put her back to bed and let her skip school because although we could have taken her, what would be the point of taking a very cranky, highly uncooperative child?
Wednesday was speech therapy, and Zoë had a bit of a stubborn fit in the parking lot. It wasn't a full tantrum, but she made it clear she didn't want to go in. Speech therapy is intense for her, and although it's play, it's also hard work. She kept saying she didn't want to, although I doubt anyone else would have understood her (I could hear that she was saying, basically, "I don't want to see Anna!").
She did, however, remember that last time she had a drink of water there and she asked for one and then reluctantly agreed to go into the therapy room. She was able to play for a little while before the actual therapy began since I was having a word with Anna about arranging a formal evaluation and so on, and by the time the therapy began in earnest, Zoë was more or less willing to go along with it. She actually did pretty well, all things considered.
Today she did go to school and had a fine time. The kids all got little Easter baskets with chocolate eggs and Zoë's were gone by the time I picked her up (she loves chocolate, yet another thing she and I have in common). Needless to say, she hasn't had much lunch, although she did make a bit of an effort and she had a big glass of orange juice.
No school for two weeks because of the Easter holiday, and Monday she has her EEG. Andrew's going to take the entire week off next week since he was already planning Monday off and Friday is a holiday as well as Wednesday (Anzac Day).
Now if we can just convince Zoë that she really does need to use the toilet instead of going in her pants, we'll be doing well...
Blood Test Today
Andrew took Zoë for her blood test today. I didn't go, as there was no need and I didn't really want to see Zoë get stuck with a needle anyway.
Apparently, she wiggled a bit but was otherwise reasonably cooperative. They were supposed to get three vials of blood, but they only got one and a half for the genetics lab to test. They said that should be enough. If it's not, we'll have to go back in a week or two and do it all over again (cross your fingers that we don't have to).
When Zoë came in, she was carrying a printed award document that said "I got a blood test and I was very brave" and it's got her name and the date written in. It also has a picture of a little fairy sitting on a mushroom, rather appropriate for our little fairy child. She was very proud of this document, and carried it around for some time looking at it and admiring the writing and the picture.
She also chattered at me when she came in. I think she was probably telling me all about it. I didn't understand much of it except for the part that noted that she was a good girl.
And so she is.
Let's hope the rest of her day is a good one.
Contrary Day
Zoë had a Contrary Day yesterday. Everything we suggested, she wanted the opposite, sometimes for what appeared to be totally arbitrary reasons. To say the least, she had a number of tantrums and fits throughout the day.
Her trantrums are actually getting worse. She's much bigger and stronger than she used to be, and it's reflected in the intensity of her tantrums. So far she hasn't had too many tantrums in public (just a couple of times, really), which is good, as it's hard to ignore something like that if you're in public. Here at home, we just ignore the tantrum until she calms down.
I still believe that the biggest problem is that she can't communicate. She doesn't understand most of what we say, so she can't understand things like "not right now, it's still cooking" or "that's not good for little girls, it can hurt you" or similar. All she hears/understands is that we're denying her something she wants or needs, and she can't even argue or reason with us. All she can do is get frustrated and angry and have a fit.
Hopefully, as her speech and understanding improve, she'll be less frustrated and less likely to go to pieces. She is making slow progress at that, but it is slow. And some days she seems to understand and be able to communicate, while other days it seems like she's totally confused by it all.
To top it all off, yesterday and the day before she failed to use the potty repeatedly. She didn't say anything, even though she knows how to ask to go potty (even if it means taking her pants off entirely and coming to get an adult). Instead, she just went in her pants. The first time, I just pointed out that this wasn't what a big girl does and reminded her that she should use the potty. The second time she did it, I was less patient, although I told her the same thing. The next day, when she did it again (three times), I was just at a total loss.
The thing is, between times two and three yesterday, she sat on the potty and did a poo and was rewarded with lavish praise (which she loves) and lots of hugs and kisses and so forth. Then she turned around and went in her pants again.
I don't know what to think. Some days I think she's making good progress and then she has days where she just seems to slide right back down the developmental scale without warning and for no apparent reason.
The waiting list to get her into early intervention can be long. I'm hoping that we'll be able to get her on a shorter waiting list (the doctor mentioned something along those lines). Zoë really needs the intervention. She's getting the speech therapy (which we pay for) and the interaction at school, but her doctor, speech therapist, and teacher all think she's benefit tremendously from the intense intervention program. I think so, too, but the waiting list is so long...
Yet one more thing for me to worry about. *sigh*
Oh, and about those pictures... I had a big, big computer crash (hardware failure) and have only just gotten things restored. I didn't lose any pictures, but I did lose the camera software, so until that's reinstalled and working, there won't be any new pictures put online. I haven't forgotten though.
Good Day
Zoë had a good day at pre-school. When I arrived to pick her up, she was playing happily with a little building toy (stickle bricks, I think they're called). She saw me and gave a big grin and when I actually got in the room she said, "Hi!" to me, which is a first as far as I can recall. While I was there, I saw her ask one of her teachers for help with the toy (she didn't ask verbally, but she did ask, and that's a step forward).
While I had a word with Ann, the other teacher, it seems that Zoë actually used Ann's name today, and she's been saying "No," now and then in response to questions or to indicate she doesn't want to do something. She's also playing with the other children somewhat, participating with, for example, a small group using Legos or blocks. She doesn't seek out other children, but she seems to be interacting better.
We're going to get Zoë on the waiting list for several of the available early intervention centers. Unfortunately, they all have waiting lists, some significant. The pediatrician will certainly help all she can, because she's concerned about Zoë's age and wants her in intervention as soon as possible.
Early next week, Zoë will go for her blood test, and we're waiting to hear back from the psychologist. Tomorrow we'll probably contact the Royal Children's Hospital about the EEG, and possibly also the audiologist.
Oh, and next week Zoë's got speech therapy. We'll have to get the therapist to do a formal assessment to include with the paperwork for Zoë's application for various aid, assistance, and so on. I suspect we'll scale back the sessions to once every three weeks instead of fortnightly. I think the fortnightly is a little too intense, and Zoë's actually doing very well with improving her speech. It's going slowly, but she's finally starting to understand that language is for communication and communication is extremely useful.
Slowly but surely, we'll get the little fairy child to a point where she can live in this world with more ease.
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