Peditrician Visit
Well, we got Zoë's initial pediatric assessment today. She went into the office and zoomed over to the toys immediately and dove right in, and then pretty much ignored us until the doctor came and put her on the table for a physical exam (looking at eyes, ears, testing reflexes, etc.).
Basically, Zoë's family history and the description of her history and behavior all point to her being mildly autistic, which isn't too surprising.
However, there are some medical tests that need to be done to rule out other possibilities, such as Fragile X Syndrome (a profile she doesn't actually fit at all, but they have to rule it out). There's also a type of brain seizure condition that impairs the ability to retain learned language (possible, but fairly rare), and they need to make sure she doesn't have that (it has totally different treatment than autistic speech delay). To do this, she needs a blood test for the Fragile X and an EEG to check brain activity, and she'll have to be sedated for the EEG. Oh, and she needs to get a full hearing test from an audiologist who specializes in children's hearing (it's very clear that she can hear, but we need to rule it out anyway).
We also need to have her assessed by a psychologist to confirm the speech pathologist's belief that Zoë is an "autism spectrum" child, and the pediatrician's assesment of the same thing. Whew.
However, we will get a "carer's allowance" from the welfare system once the diagnosis is confirmed, and that will help with all the expenses we're racking up, since most of the stuff we're having to do is only partially covered by Medicare or our private insurance.
We'll also be able to get her into an early intervention program once we've got the full diagnosis in hand, and it turns out there's a center for such things just up the street from us, a few blocks from Zoë's pre-school. I was also told (can't recall if the doctor mentioned this; she probably did but I was pretty overloaded by the time we left) by the mother of another little girl (now nine) who is austistic that the social service system can and will provide a special helper for Zoë at pre-school, partly to relieve the burden on the teachers, since Zoë takes so much extra attention, and partly for Zoë's own development. She does respond well to one-on-one therapy once she gets to know the therapist, so I think that would help her a great deal.
Now a few words about autism. I've done a great deal of research on the topic and talked to a number of people, some with autistic children, some with expertise in the field, and so on.
Basically, autism is a spectrum. On the very far end of maximum impairment, you have children who are, well, very impaired. Many of these children don't like to be hugged or touched (usually because they're extremely sensitive and they experience it as painful), some are totally non-communicative, and so on. At the other end of the scale, you have children who are pretty much normal but have some difficulties and problems in some areas (but not others). It's a very individualized thing. One child may have acceptable or only slightly delayed speech but have very great social difficulties and motor problems. Some children may have big problems with sensory organization (i.e., with processing the informaiton they get from their senses) and with speech, but their social adjustment is only a little below normal. The possiblities are quite vast and variable, sometimes even in the same child. A child who is totally non-verbal one day, may be reasonably verbally communicative a couple of days later.
Zoë's major problems are with language, both expressive and interpretive, and with social integration (she's mostly indifferent to children her own age; I believe this is rooted in her inability to process communication well). She also has some behavior problems such as being an enormously picky eater and sleep disturbances, and possibly some secondary problems because of her poor diet (anemia, for example). She is, however, spontaneously affectionate with people she knows (parents, teachers, certainly with her baby sister), her hand-eye coordination is good, and she's got good motor skills and shows plenty of signs of imaginative play. Her potty training delay is probably due to her inability to understand direction and inability to communicate that she needs to go, but this kind of delay is quite common in autism spectrum children.
So, basically, "autism" is a sort of "blanket" description of a collection of symptoms which may range from quite mild to very severe, and which may not be present in all areas known to be associated with autism. It's not known what "causes" autism, but it probably has a genetic predisposition (and Zoë's family background on both sides fits the profile perfectly, with an abundance of people skilled in music, mathematics, and science, and a tendency to be intellectually gifted). There are probably also environmental factors, but no one really knows what they are (it's probably a combination of things). It is known that autistic people have differently formed brains in some areas. This has been discovered by autopsy and confirmed in living autistics by CT scans and similar high-tech means (although Zoë isn't going to have a CT scan).
Personally, I don't care what label they put on her, so long as it gets her into a program where she can get the kind of help and therapy she needs to get past these problems. And the fact that's she's already outgrown some of her earlier autistic-type behaviors is also encouraging. Even the doctor said that she'll be fine in the long run, but she does need special attention and handling now to get there.
You may notice I've included some links under the fairy on the left if you're interested in reading more about autism spectrum disorders. I'll probably be adding a page to this site about autism at some point in the future. But first I have to get more pictures online! (Hi, Grandpop!)
Potties and Sisters
Saturday night, Zoë came trotting into the room, naked from the waist down. I asked her if she wanted to go potty and she said, "Poo potty," and led her dad into the bathroom, where she lifted the seat, put her own special insert seat in, and climbed on by herself. And she did, indeed, poo in the potty.
Some days are better than others though. Tonight, she had a bit of an accident and didn't say anything at all to either parent.
She did spend some time playing with her baby sister tonight. It was terribly cute. They sit together and quietly play, and periodically have a wrestle, generally initiated by Zoë. And when Miranda crawled away to explore something else, Zoë followed her and tried to pick her up and bring her back!
Proceeding slowly
Things are very hectic around here lately, and I'm a bit distracted, and I still haven't gotten those pictures processed, let alone do much else.
Zoë didn't go to school Thursday. I went to get her up and she was completely zonked. I could have shaken her or something to wake her, but normally she springs right up when I open the door. I did call her name a couple of times but she was snoozing quite peacefully and I thought it was probably better to let her sleep.
She'd been awake during the night (a common occurance) for what sounded like some time, and I think she was just really tired. Since Miranda was asleep, too, I went back to bed and just listened for Zoë. She woke by herself around nine and sang to herself for about fifteen or twenty minutes and then went back to sleep for a couple of hours, and she was quite pleasant when she did finally get up, so I think the sleep did her some good.
I have most definitely noticed that she's much more cooperative and inclined to talk or otherwise communicate when she's had lots of sleep. When she's tired, she's cranky and difficult to deal with. We're trying to get her to sleep more, since the quality of her sleep isn't that good most of the time.
In fact, she didn't sleep through the night until she was over a year old, and I don't know if she actually started to sleep through or if she's just learned how to put herself back to sleep. Lots of times I hear her at night, talking or crying a little bit or singing to herself. She wakes up and plays or chatters for a while and falls back asleep. Sometimes she's awake for a long time, sometimes only for a few minutes. (I'm something of a restless sleeper, myself, so I can fully appreciate how cranky it can make you when you wake up all the time and can't get back to sleep easily).
She has been talking more and more. She seems to kind of come and go with it. Some days she's very talkative (well, talkative for Zoë; for any other kid it's still pretty muted) and repeats a lot of words and phrases and uses a few words/phrases spontaneously.
She also has a funny little habit of making up a song about whatever she's doing or has just done and singing all about it. She sings about going to the potty, about being a good girl, about having a drink, you name it. I think she probably got the idea from me, because I do make up silly songs to sing to her and her sister. I didn't actually expect her to start doing it, but it's cute that she does.
If I can get my act together, I'll get some pictures online soon. I just need to find the mental capacity to concentrate for more than two minutes, and that's proving to be difficult at the moment...
Dancing Girl
It's raining today, so the little kids couldn't go outside to play at pre-school. I asked one of the teachers what they do instead, and she said they sing and dance. I was holding Zoë at the time and I turned to her and said, "Did you dance today?" and the teacher said, "Actually, she did! She got right in the middle of the group and danced around."
So there you go. The kid definitely enjoys her music. When she's older and if she's able, we might see if we can get her some dance lessons (but since a lot of that depends on understanding language, we'll have to wait until she's got better communication skills, I think).
Bad Day
Zoë is having a bad day. She didn't sleep well last night, waking up in the middle of the night for some reason, and staying awake for a while, so she was tired today.
This morning she didn't want cereal, she didn't want milk, she didn't want to have a shower, she didn't want juice, she didn't want to get her socks on, she basically just didn't want anything and made her protests known.
When we finally got out of the house and off to her speech therapy I told her where we were going but she didn't understand me, because when she saw where we were she started to cry again and refused to get out of the car seat (kept putting her arms back in the straps as I tried to take them out). I got her out and she collapsed in a heap on the ground for a little bit, causing Anna to come out to see what the commotion was.
When Zoë saw her, she sobbed, "I don't want to!" or words to that effect. It's not that she doesn't like Anna, but speech therapy is difficult and she wouldn't even consent to eat a cup of yogurt, so there was no reason she should easily submit to therapy!
We did go in and Anna did manage to engage Zoë's attention and Zoë ended up being pretty cooperative. They did some drawings and puzzles and interacted for about 45 minutes (the standard length of a session) and then Zoë promptly tuned out and refused to go along with any more.
She is making some progress, though. She does like Anna and responds to her fairly well, and she's starting to say "No" in response to questions, which is a new thing. She's also shaking her head for "No".
Next time we see Anna, Zoë will have had her pediatric assessment, so we'll be better able to proceed with a plan for therapy, etc. Meantime, I'm trying to incorporate some of what I learn by watching Anna in therapy.
And right now Zoë is sitting on the floor, happily reading a magazine. You'd never know this is the same child who fought me on every point this morning.
Family Reunion
Yesterday was an interesting day out. We went for a rather long drive (about two hours) to the country, where we attended a family reunion. This is not your ordinary family reunion, though, but one that goes back to the founding of a town (well, a settlement, anyway; I don't think you can really call Arawatta a "town"). It's a gathering of the descendents of Andrew's grandfather's grandfather, so that gives an idea.
We went mostly to provide updated information for the extended family tree and also to bring Grandad home (he went there Friday via train and a lift from one of his sisters, and stayed the weekend with family there).
The girls did fairly well in the car. Miranda fell asleep on the way there, but Zoë stayed awake and managed to amuse herself for almost the whole trip. Now and then she'd get restless, but we managed to get her interested in things like singing songs or looking out the windows at the cows. I don't know if she was really looking at the cows, but she did enjoy her father making cow noises.
Once we arrived, the girls were restless and wanted to get going. We managed to get some lunch into them, and Zoë was mostly pleasant for the first couple of hours we were there, but after a while she was quite bored with all of it. We ended the afternoon with Andrew outside with Zoë, trying to keep her busy while the organizers of the event made their announcements and gave their thanks and that sort of thing. I was inside with Grandad and Miranda, and I could hear Zoë outside complaining, shouting, eventually crying (apparently she wanted to touch an electric fence and her father wouldn't let her and this was cause for tears).
She fell asleep in the car on the way home, which we pretty much expected she would.
Today, she's mostly calm and happy to watch some television (even though it's something "boring", i.e., it's not a kids' show). She hasn't had much to say today, either, mostly just "Oh, no!" when she was upset about something earlier, so I think she was probably worn out by yesterday's excursion.
Oh, and yes, I've got a lot of pictures I need to process and put online. I've been pretty distracted with other things, and have been terribly remiss in doing that, but I've got the pictures and the camera and time now, so expect to see pictures online very soon, including a few from the reunion.
Revelations
I was one of the "parents on duty" at Zoë's pre-school today. What an eye opening experience.
I got to see, firsthand, Zoë in that setting, and I also had the opportunity to see and talk to the other children. Zoë is worlds apart from them. I mean, I knew she was a little odd, but seeing her in stark comparision really drove it home. The child is really different.
And as luck or providence would have it, one of the other parents on duty was Sal, the mother of Sam, an austistic daughter who is now nine years old and doing well. Sal's description of Sam at age three was very, very familiar to me, from the odd potty training (i.e., bowel control without many problems, but no idea about bladder control) to the strange eating habits (won't eat anything that doesn't look exactly right, won't try anything new) to the speech delay and lots more. I was actually rather amazed at how familiar it DID sound. Sam is also very affectionate, makes eye contact, communicated rather endearingly through gesture and mime, and would form relationships with adults, older children, and younger siblings, but not with same-age children (although I must say, Zoë seems to have made a little bit of progress in that area, but only a little).
Sal recommended a particular pediatric psychologist, Dr. Chitra Chandran. Later, and without my asking, Zoë's teacher also mentioned this doctor and said she'd had other parents who went to her and were very happy with her prompt diagnosis and assistance, so we cancelled with the doctor we were going to see and will get an adjusted referral to Dr. Chandran. If it takes a little longer to get in to see her, that's okay. I think it'll be worth it.
Apparently, if Zoë is diagnosed as austistic (and austism is a spectrum, so it's possible to be very severely autistic or only mildly autistic, with lots of variation in between), it's possible to get her into an early intervention program fairly quickly.
Sal assured me that Sam is now, to all appearances, normal and that it would be difficult for anyone to know she's autistic. She reads well, she speaks fluently, she's very good at a few specific interests and does well enough in other areas, etc. Sam does go to a special school, because she didn't do well in a traditional school setting, but as far as I'm concerned, a special child should be in a special setting.
I care not one bit that Zoë isn't "normal". Normalcy, as I've often said, is highly overrated. I'm more interested in having her get the help she needs so she can have a happy, productive life and get along well in the world.
So there are my revelations for... well, a long time, I suppose. And it's a lot to take in all at once. I don't know yet if I have entirely absorbed it, but the biggest thing is that now I've absolutely seen for myself that Zoë is noticibly, absolutely, and definitely different from other children her age, and also that there's hope that she can still have a bright and happy future. I am both relieved and somewhat startled by all of this. It'll take some time to sink in. I don't really care what label they put on Zoë's developmental delays, though, so long as we get it treated.
Public Potty
Yesterday we went out to the shopping center and had lunch. After lunch we went to the parents' room to check nappies and so forth and Zoë had a bit of a stain (but not much). I thought perhaps it would be a good idea to put her on the potty, so that's what we did. They had a small child-sized one and she thought that was pretty interesting, and when I told her to do a poo if she needed to, well, that's just what she did.
Naturally, we made a big production of how good she is and what a big girl she is. A little later she was singing one of her little "made up on the spot" songs and I caught bits of it. She was singing about how she's a big girl who did a poo on the potty.
She's also a generous girl. We got her a frozen yogurt cone and she shared it with her little sister willingly (we got a spoon to feed bits of it to the baby). When she got down to just the cone, Miranda was watching intently, occasionally trying to take it away from Zoë. Zoë just turned her back and continued eating, although she did let me break off a little piece to give to baby sister. Last time Zoë had a cone, Miranda ate pretty much the entire cone (although not the yogurt), and I think Zoë wanted to make sure it didn't happen again.
Playing and Talking
Right as I type this, Zoë is playing with her little sister. She's putting a toy hat on the baby, who finds the whole thing hilarious. Zoë's chattering away as they play together, it's really cute.
Her eye contact is getting much, much better. She's really using her eyes to communicate now, even when she doesn't necessarily want anything. It's not that she hasn't made eye contact in the past, but she's just doing it a lot more now. I'm trying to get her in the habit of making eye contact when I ask her a question, because I can usually tell what's going on in her head if she'll just look at me.
Which leads me to another observation. She will establish relationships with adults fairly easily, and she certainly has a relationship with her little sister. She clearly likes her teachers, and she also likes her speedh therapist, and of course she's communicative and responsive to her father and me. She's even been known to make friends with older children, such as at Sunday School. It seems the only people she doesn't seem to be interested in is children around her own age.
I'm wondering if this is because she knows she won't be able to communicate with them. Adults make the effort to understand her and she knows that. Perhaps she knows that a peer wouldn't or couldn't.
Oh, and she said a new word today, one I hadn't heard before. She may just have been echoing me, but it was still a new word. I was cleaning her very wet bottom after getting her out of bed and when I finished I said, "There, is that better?" and she answered, "Better." Well, actually, she said, "Betta" with a distinctly Australian accent.
Speech Therapy Today
Zoë had therapy today. She did reasonably well, although at first she was deliberately ignoring Anna, the therapist. She wanted to play and interact, but she didn't like the demands Anna was making on her (requiring her to make eye contact, etc.). She tried numerous ways to get around it, and eventually she settled down and responded to the therapy.
By the end, I could tell she was tired and overwhelmed, but she wasn't upset or anything. In fact, she went over and climbed up on Anna's lap and had a bit of a cuddle and a play.
Anna's of the opinion that an early intervention program where the parents are involved would be the best thing for Zoë, and that she would respond well to a structured program. We'll be looking into that very soon, in fact, because Zoë really needs to get some work on her social interaction and social skills.
The odd thing is she's happy to form interactive relationships with adults, and she's certainly got a relationship with her baby sister, and she's been known to befriend older children (such as at Sunday School), but she seems totally disinterested in playing with children her own age. I suspect that it's partly because she can't communicate with them (or them with her), so she just doesn't bother...
At any rate, we're still pursuing the therapy and intervention. As for getting a "diagnosis", I don't know that it's actually necessary. She's got some noticible developmental delays, yes. So long as we get the therapy and help her overcome these things, I don't think it matters what label we put on her.
Quiet Again
Well, after a burst of speech last week, Zoë has gone back to her usual mostly quiet self (except when she's supposed to be taking a nap, which she sings, shouts, and chatters to keep herself awake as long as possible). She did say "pet the cat" again while stroking Miranda's hair, and tonight before bed she said, "I love you, too" (well, not very clearly, but that's what she said). Other than that, she's been mostly untalkative.
Her eye contact is improving a lot, though, and it's clear she's understanding a lot more concepts, things like "wait" and the notion that she needs to stop crying and be a big girl (this is mostly when she's had a tantrum; naturally legitimate crying is all right).
One kind of funny thing is that I've been using sign language with her and when I was telling her that school was finished and used the sign for that, she turned her head so she couldn't see me signing. It's obvious she understands that signing is communication and she didn't want to know about it.
I did talk to her teachers a bit about her behavior and so forth. She seems to be doing well. She has a bad habit of running around all through snack time, trying to take other people's food, refusing to sit and eat her own, etc. Today, they gave her a special chair with arms on it to sit in for snack time, and she actually sat for the whole time and ate all of her snack for the first time.
She's still not at all interested in the other children, though. This worries me somewhat. It might be just that she can't communicate with them so she doesn't bother, or it might be a sign of deeper developmental problems. At her age, she should be at least mildly interested in other children her age.
On the positive side, she is interested in her father and myself, and her baby sister. In fact, today she did say "sister" at one point...
Pet the cat
Yesterday, I was sitting on my bed feeding the baby, and Zoë came in to see what we were up to. She gave me a cuddle, and then I took her hand and showed her how to stroke Miranda's hair as a gesture of affection (she does give kisses to the baby, but that's about it). Zoë seemed to enjoy that and so did Miranda, and then Zoë grinned up at me and said, as clear as day, "Pet the cat."
I laughed and said, "No, not the cat. Miranda. Pet Miranda." Zoë considered this and then said again, "Pet the cat."
We've taught her how to pet the cat with gentle strokes, and I guess she just associates the phrase, "Pet the cat," with any sort of gentle stroking.
Last night we went to dinner to celebrate Aunty Robyn's birthday, and it was a rather long dinner, several courses. Zoë was surprisingly well-behaved, considering how long it was and how relatively boring (for an active pre-schooler, that is). She was quite pleasant through the evening, and only got restless after about two hours.
The funniest thing she did was to want to go for a bit of a walk, so Andrew went with her. She went out into the foyer where we'd come in and tried to open the door while saying, "Bye bye! See ya later!" I think it was sympathetic magic. Since you say that when you leave a place, maybe saying it makes it happen...
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