The Daisy Updates

1) OT appointment on Feb. 12. No new information yet to share :-)

2) The pet of Daisy's classroom--a guinea pig named Cupcake--died last week, and so the kids all learned about death during circle time (the ones who hadn't learned about it in some other way already, I should add). I was nervous about what I'd hear when I picked Daisy up from school, but she simply said, "Cupcake died. He is under a rock in the yard. We sang him 'Rudolph the Red-nosed Reindeer.'" This was enough to make ME burst into tears: something about the kids gathered around a rock in the schoolyard and picking "Rudolph the Rednosed Reindeer" as their parting song to Cupcake. But Daisy didn't cry, and she seemed sort of interested, but not particularly heartbroken. I had the chance to observe a bunch of the three-year-olds reacting to Cupcake's death, and they were all pretty much the same. They wanted us to know, and they had a few questions (mostly pragmatic, though, not "Big Questions"), and they almost all stopped to show us the rock on their way out. It was touching to see the little circle of three-year-olds gathered around it, puzzling over what they had just seen. Somebody asked (actually, it may have been Daisy), "Is he warm under there?" But they seemed more curious than distressed. [Oh, and one of my favorite exchanges: I heard one of Daisy's three-year-old compatriots being told by her mom, "Cupcake is in heaven," and the little girl promptly replied, "No he isn't. He is under a rock."]

The four-year-olds were upset, though. They were sooooo different from the three-year-olds. It kind of blew my mind. The four-year-olds were grieving for Cupcake. Whatever happens conceptually between three and four, it is BIG. They are totally different people when it comes to the ability to grasp loss. Prepare yourself, Self.

3) Daisy may not grasp death yet, but she is going through some significant fears. She had been talking about monsters at bedtime for weeks now, maybe months. It's made me wonder if we've been irresponsible about letting her see things on TV, but we are so careful. She can't handle anything more intense than Sesame Street, and she will tell us directly if something scares her and we turn it off. Really, she is not seeing anything scary on TV, and yes, I know there are "monsters" on Sesame Street, but they are ELMO and his friends. The fear of monsters could just as easily be coming from her books. It does not take a lot to scare Daisy, we are learning, and she fairly frequently tells us a book we've selected is too frightening and we have to stop reading it.

Anyway... whatever the cause, it's too late to go back now. She has this fear of monsters. We have to leave her bedroom door open now and lots of lights (it now seems like a distant memory that we used to be able to turn off her lights and shut her door!). But she still gets scared and often calls out now in the night. We have had some nights where we've gotten very little sleep. She sleeps with the monster beads I gave her, but they don't seem to be doing the trick. I think we may have to put a bed down on the floor of our room and give her permission to come sleep on it if she's having problems. That would be better than having to go into her room constantly in the middle of the night. Maybe we'll try that, but I don't know if that will work, either.

4) Daisy is growing up. More and more she seems to me like a fun companion, rather than a kid who needs watching. I truly enjoy my time with her and my favorite days are "Daisy and mama days." I missed her terribly on Thursday, which is the day I'm at school almost all day. I enjoy my classes, but it's hard to be away from Daisy. There are so many wonderful things to do together, and most of the time, Daisy is up for anything and in a good mood, willing to try anything I suggest. So, although I continue to feel stressed out about money, school, job possibilities, and other basic survival types of issues, I have to call these good times of my life, because it's such a wonderful time with Daisy.

Magical Beads and OT

1. I never thought I'd try something like this, but last night I gave Daisy a magical bracelet to "ward off monsters and other make-believe things." We have been telling her, over and over and over again, that there are no such things as monsters. This approach does not work. She immediately agrees to it; yes, there are no such things as monsters. Then she says, "But what if there WAS a monster, and it came through this wall?" It occurred to me yesterday, while reliving some lovely childhood memories with my family, that my terror of vampires was not allayed by knowing they didn't exist--and I was eight, not three. I knew there were no vampires, but somehow, it didn't help with the fear. The only thing that helped was the basket of garlic my mother gave me. Soooo.... last night I gave Daisy a magical monster-defeating bracelet. I told her that monsters were make-believe, but that this bracelet helped with make-believe creatures. She thanked me profusely. It still took a long time for her to go to sleep, and I don't at all know that the bracelet is going to work, but that's my latest attempt to deal with the ongoing fear of sleep problems Daisy is having. Sigh; like mother, like daughter, apparently.

2. The OT therapist called last night and I made an appointment for Daisy. She is going to get a full evaluation. I am glad I'm doing this, and so many trustworthy friends have assured me it's a good thing, but I feel a little nervous. Mark's cousin, who is a doctor, gave us the good advice that you want to be very careful about letting the system put diagnostic labels on your child, and that makes a lot of sense to me. Although the OT seemed nice, I couldn't help sensing on the phone a certain eagerness to get her diagnosed. I asked him whether sometimes, you had a kid who just had delays in developing fine motor skills, and no other larger problem. He answered yes, but a bit hesitantly, like he didn't expect that to be the case with Daisy. Usually there are other, bigger issues.

Then he described Asperger's and sensory processing disorder to me, both of which I've heard about from others and read a little bit about. I don't want to come across as defensive--refusing to believe that this could be true of my child-- but they honestly don't sound like her. Daisy is very good at reading social cues, which makes her not seem to fit the description of kids with Asperger's. Her favorite time of the Montessori day is circle time because she enjoys the communal, interactive time so much. She doesn't have trouble with transitions from activity to activity (I think she's actually better at this than other 3-year-olds) and is flexible and adaptable to new situations. I'll certainly be open to hearing what the OT has to say, but these are the two criteria he described on the phone, if I'm remembering correctly, and they don't sound at all like Daisy. I could possibly be confusing some of the symptoms of sensory processing disorder with the ones he described for Asperger's, but suffice it to say, none of them sounded like Daisy. The other ones (associated with sensory processing disorder, I think) had to do with sensitivity to stimuli--like not wanting the fabric of your shirt to touch your arm or needing the tag cut out of a garment; being extremely finicky about food, to the point of only being able to eat a few things; problems being in a crowd or large group activity; hating the feeling of having hair washed; and some other things that I'm not remembering so well right now.

I realize Daisy might not have every symptom listed here and could still have the disorder. But it takes a big stretch for me to make her fit. The parts about crowds and groups don't fit at all. The part about "finicky eater" has to be pressured to fit. Yes, she's never been a hugely enthusiastic eater, and she would rather eat treats than salad. But she's THREE. I would not say she is an adventurous eater, but I could easily come up with a pretty long list of foods she eats: almost any Asian food, macaroni, pasta, chicken, broccoli, carrots, peas, Matzo ball soup, almost any fruit.... So, yes, she's a 3-year-old eater, and not the best. But the children who have the disorder sound more extreme in their pickiness. Then some of the other ideas: okay, no, she doesn't love having her hair washed because she doesn't like the feeling of water streaming into her eyes, and sometimes she protests, but she WILL do it. Does that qualify as meeting one of the criteria? Do other three-year-olds enjoy having their hair washed? And then the one about sensitivity to clothes. This one made me a little nervous, because it's true that Daisy would rather wear a tank top than anything else. She has told us she strongly prefers "no sleeves." She has strong opinions about what she wears in all areas, though. She likes to wear tight pants, not "wiggly pants." She prefers red and pink to other colors. There are some other prefences that I'm not thinking of right now. But I've heard from other mothers that their three-year-old girls are expressing strong opinions about what they wear. Does this necessarily mean sensory processing disorder?

From what I've been able to learn from Daisy, I don't think her preference for tank tops has to do with feeling like her skin is irritated by sleeves. When we make her put on something with long sleeves, she's fine. And she almost always wears long sleeves to bed. The preference for tank tops seems to be an aesthetic choice, rather than related to feelings of skin irritation. Daisy doesn't seem overly sensitive to any kind of stimuli, as far as I can tell.

I truly want to be open-minded and not defensively shooting down the possible diagnoses of Asperger's or sensory processing disorder. If Daisy has either of these conditions, I want to know so that I can be the most helpful mother possible to her. But the only symptoms I can say with certainty she shares with these diagnoses are hypertonia (the low muscle tone) and delayed development in fine motor skills. What if that's all there is?

So I will go in to the meeting with an open mind, but I also want to be prepared to ask challenging questions if the OT seems quick to diagnose. I am taking with me one memory that makes me wary: a college psychiatrist who wanted to slap a label on me that did not fit and immediately begin heavily medicating me. I could tell she had leaped to conclusions about me based on some of the leading questions she asked me-- questions that showed she had already formed her opinion of me and presumed a certain answer. I had done my own research and when I asked her a few questions-- not defensively, but so as to participate in an informed way in my own diagnosis-- she became extremely defensive and wouldn't or couldn't answer. She seemed very surprised that I would become informed on my own and have any questions, rather than just immediately accept her word for it. Then she told me that when I was ready to "accept my diagnosis," I could see her again. Needless to say, I never returned and I never took the medication she had in mind for me. I am 100% positive she was on the wrong track with me then, twelve years ago.

I guess I want to be sure I'm a good advocate for Daisy if I sense something similar happening here. I don't want the ball to start rolling with a diagnosis that may not fit her.

My baby and occupational therapy (maybe)

Deep sigh. I have to state for the record, first, that Daisy was the most verbal child I have ever met in my life, and I swear it's not parental bias. She had several words (dada, mama, hi, hey) by the time she was six months old and many more by the time she was nine to ten months old. At 16 months she spoke in phrases and short sentences and started counting; she had long sentences under control by 18 months. Her pronunciation, too, has always been oddly precise and non-babylike. Before she was two, she had memorized entire books and would sit by herself, turning the pages and reciting the entire story word for word. She did this with dozens and dozens of books. Now that she's three and a half, she can read a little, do some addition and subtraction, and count forwards and backwards without error to high numbers. I have also found her to be a quick study when we've tried to teach her important skills. She potty trained quickly, hardly ever had accidents, and has been out of nighttime pullups for months. So: I am pretty sure, when I remind myself of all these things, that she is intelligent and alert upstairs.

But she didn't crawl till she was a year old, and she didn't walk till fifteen months or so. Around that time her doctor referred her to a physical therapist who told us she is extremely flexible with loose joints and low muscle tone (hypotonic). At three and a half, she still does not climb ladders and is so afraid to try that I can't even attempt to teach her. At the playground she is outdone physically by two-year-olds. I can't get her near a tricycle and she shows great trepidation about any toy that involves movement. Her preschool teachers have told me extensively about her poor motor skills. Her hands don't have good control (although they highly praise her page-turning ability, which is a fine motor skill); she is not strong; she is uncoordinated; she needs to learn to hop on one foot and skip; etc, etc, etc. They pointed out that she has a very hard time taking her shoes on and off and with other articles of clothing, which is certainly true (we've been working on it; she's gotten a little better). Apparently they have a hard time getting her out of the library section of the room, and at times she lies on the floor talking to herself. (When I first heard this I was a bit freaked out, but even at home she sometimes sits with her dolls and animals, telling long, animated stories and doing "voices," which is just so cute--and I guess she might do it lying down sometimes.)

Today I tried to make cookies with her and felt almost speechless realizing the extent of her limitations. I asked her to mix things with a wooden spoon but her arm was like a limp noodle. As much as I encouraged her, she was either unable or unwilling to put any strength into it whatsoever. I switched to having her scoop flour out of a big bowl and dump it into my bowl while I mixed, but this task proved even more challenging. She was unable to scoop much flour and I'm almost embarrassed to describe her technique, which mostly consisted of skimming the bottom of the measuring cup along the top of the flour. I think she was really trying, too. Her dumping of the flour into my bowl was highly inaccurate, too.

I started to feel worried. I've made an appointment now at Kaiser to have her evaluated by an occupational therapist, but I am almost afraid to hear what he or she will have to say.

EDIT: Okay, that was yesterday. I was totally appalled by how unable she was to help me with the cookies. I agree with her teachers that her motor skills need work, and I am going to keep the OT appointment. But I have calmed down. It must be the book I am reading about multiple intelligences!

Also, it's not as if she doesn't like playgrounds or doesn't like to do anything physical. She loves dancing and physical play, and she's often quite active at the playground--just not doing the same things on the same level as other kids her age.

The other thing I don't quite get is that when she seems motivated and interested, she seems able to master a fine motor skill. For instance, the page-turning: she really was good at it from an early age, and probably at an earlier age than other kids--very precisely turning pages and not missing a page or ever ripping a book accidentally. And lately, she has mastered bead-stringing, which is a fine motor skill. So... maybe she is just not interested in the other skills? I dunno. I'd love to hear the OT's view. One of the reasons I worry is that you read all the time about the importance of "crossing the midline" and it's a big deal in Montessori education.

New Year's Eve

This is what we looked like right before we went up on the roof of our building at midnight with our friends! Daisy was very, very excited to be up there at night. I just can't believe she was still awake.