Long and Long Overdue Bookplayer Update · 1:53am Jun 20th, 2017
Hey, guys!
I’ve been a total flake a lot lately. I have a pile of people helping me with various things, from Sun and Hearth to BronyCon, and I haven’t gotten back to them. Not to mention going silent on comments and stuff I should reply to.
The short version is that I’ve been really busy and having a rough time. I appreciate all the comments I’ve gotten, I’m excited about all of the projects I’m committed to, and I don’t mean to imply otherwise. I’m working really hard to keep up with things, but sometimes things fall too low in my priority list or I’m just not fit for anything but saying something pointless on someone’s blog.
But I’ll keep working and hopefully the vast majority of things will be handled.
The very, very long version is under the cut. Because it’s really complicated, which I why I haven’t gone into it a lot before, but I really need several people to know what’s going on, so I might as well let everyone in on it.
It’s about Trixie. She’s a peculiar child in a lot of ways, big and small. She is also, I want to be clear, a very happy little girl, absolutely adorable, and physically healthy.
One of the major ways she’s peculiar is that she has some pretty big speech difficulties. We have no idea how big.
Expressive language is the ability to speak or sign or write. Receptive language is the ability to understand those things. Usually,kids learn receptive language first -- they understand things like “look” or “get the cup” then they start speaking. Trixie has very little of either kind of language.
She’s also strong-willed, independent, and stubborn, and doesn’t seem interested in the kind of things kid her age are usually interested in. Toys, TV shows for really little kids, what adults are doing and the way people usually interact with toddlers often get a shrug or an eyeroll (literally.) At the same time, music of most kinds, almost any nature from dirt to plants to the barnacles on my mom’s pier, video games, books (looking at them, not having them read to her,) and, of course, MLP, are worthy of her attention.
...and all of this makes the language thing even harder. Things that motivate little kids don’t motivate her, and things that might motivate her are hard communicate.
Trixie is almost three, and this is becoming a big problem. I’ll explain more below.
One important piece of information is that my mom happens to have a PhD in developmental psychology and lives next door. So not only do we have easy access to one of the professionals we would need to see about this, but she also has the background to interpret studies and recognize more specialized experts, and to help sort the good theories from the less likely ones.
I’m going to go to Q&A format to cover the details:
Does she have hearing problems?
Not that we can detect. It’s weird, you could set off fireworks next to her and she probably wouldn’t turn her head, but she can also hear MLP come on from a floor away, and the audiology tests that have been done on her have been normal.
The problem is that we can’t do all of the audiology tests on her. The combination of being strong-willed, stubborn, independent, and not understanding instructions makes a lot of things difficult to impossible. You can’t get her to indicate what she can hear, because at any given time she might be uninterested in the noise or ignoring/not understanding your request.
So, is she autistic? Ignoring you and not seeming to understand speech while focusing on other stuff seems like autism.
Let’s pause for a moment here and talk about labels. A diagnosis like autism is useful if it predicts outcomes and/or suggests a treatment. While Trixie does have some symptoms of autism, she also totally lacks some of the defining symptoms. She’s very physically affectionate, she loves exploring new places and rarely is overwhelmed. She seems at least cognitively average (sort of. We’ll get to that) and in some ways socially mature (we’ll get to that too.)
On top of that, autism is extremely hard to diagnose in young children, because many symptoms are, basically, not developing past the stage she’s currently supposed to be in.
So currently we are using some treatments that are also used in line with autism, while rejecting others that seem designed to help with symptoms she doesn’t have.
My mom’s professional opinion is that she’s not autistic. The experts we’ve consulted suggested that the question to ask is “If this child was speaking, would you suspect she was autistic?” And my mom’s answer to that is no. I’m not opposed to the diagnosis on a second opinion, but I’d need the person to be giving me more reason than she doesn’t understand language and she’s overly focused on her own business. That’s probably not going to happen, and if it does she’ll have to be older.
But you’re looking into this stuff, right?
Yeah. We’re in touch with Mary Camarata, who’s one of the top experts in the country on late-talking children. The next steps would be talking to a neurologist, and/or taking her to Nashville so Mary could test and observe her. Those are both still on the table, though Mary thinks Trixie will start talking soon. (She also thinks that Trixie might read along with learning to talk. Right now we're using a card-based communication system, and Trixie picks up and remembers both complex pictures (like a specific view of a place she likes) and more abstract symbols (like word-based logos) easily, and recontextualizes their meaning when she needs to (using a picture of an object that happens to be outside to indicate she wants to go outside when she has no interest in that object, or using her card for a TV show when she wants to rewind it to the beginning.) So we're beginning to transition her object and activity cards to just words, which would allow her to sight-read them in other places as well as making it easier to teach her fluent communication.)
So, you said she’s at least cognitively average, sort of? What does that mean?
Well. First, cognitive development in kids is kind of… everything. Skills, ability to understand cause and effect, ability to understand ordinal events, numbers and letters and associating numbers with quantity and letters with sounds, understanding how things work in general, and basically becoming people.
And so much of that is imparted or reinforced with language. Even when you’re showing a kid things, you tell them what you’re showing then. You tell them these puzzle pieces are supposed to look like a puppy, that you put big blocks on the bottom and little blocks on top, that this sign means stop, that this thing is trash and goes in the trash can.
The other way that children learn these things is through imitation. But, as mentioned, Trixie doesn’t pay a lot of attention to adults unless she feels like it.
Not having language, and being so stubborn and independent, Trixie is a little behind in these things. I can’t tell her how to do them, and if I show her I can’t make her pay attention or correct her when she’s doing it wrong.
But what’s notable is how little she is behind in them. Over all, she’s done a pretty astounding job of figuring things out. It’s just that she has to figure them all herself, from the pieces in front of her. So it’s almost certain that she’s of at least average intelligence, and she might even be especially smart and/or learning unique ways of thinking to be keeping up even as well as she is.
The good news on this front is that, if this is the case and assuming that she’ll learn some form of language eventually (which is all likely) she should be fine by the time she’s an adult. It happens that one of my mother’s professors in her graduate program was Hans Furth, who had done a study in the 60s and 70s on deaf children who hadn’t learned sign language (this was back when this was something that happened fairly often.) He wrote a book on it, but the long and short is that he found these kids were well behind cognitively by the time they were taught sign, and remained behind through school, but eventually did catch up by the time they were adults. Not the best case scenario, but good to know.
What about social development? I mean, language is kind of important for that…
Well, obviously. And in some ways Trixie is socially immature. But once again, she’s developed an impressive array of tools for trying to bridge that gap.
First of all, in terms of communicating with peers, that’s only just becoming an issue. Two year olds are still mostly engaged in parallel play, sitting next to each other, watching each other, but not really interacting past occasionally taking a toy or imitating what the other kid did. Trixie’s pretty good on this front. She’s bossy and not very delicate with kids her own age (though she’s more gentle with younger kids,) and still thinks running around for no reason is a great time, but if she was talking, she would just be that kid. The one that makes other adults roll their eyes and wonder what kind of parents she has.
Kids have started coming over and talking to her, and she has no idea what to do with this, but there’s not a lot we can do there other than work on language.
She communicates with adults fairly well (extremely well for not having language.) Through pulling, leading, moving hands, and varying tones of her babbling and facial expressions, she expresses what she wants and how she feels about it pretty easily, and is happy to continue any behaviors that make this process more smooth.
She is an expert manipulator. She has been since she was little. By the time she was 18 months she knew how to feint-- for example, if she wanted to get into a cabinet but I was blocking her from it, she would go across the room and start messing with something to get me to move, then dart for the cabinet. At two, she had figured out that if I was trying to ignore a temper tantrum, purposely knocking over my coffee would force me to pay attention. Currently her trick is to very theatrically fall back and knock her head on the floor -- carefully, and looking to make sure I’m watching her, or run her fingers down her face so I can see she's "crying" (even when she's not.)
She has a flair for drama, but it’s very clearly drama. She can switch from full blown temper tantrum to “Oh, okay.” as soon as she gets what she wants (which happens fairly often, unfortunately. As little as I want to reward tantrums, the lack of language means that sometimes I was in the process of getting her whatever she wanted in the first place and couldn’t make her understand that) or decides that whatever she wanted isn’t worth all this trouble.
What about physically? How’s she doing there?
Great! Just 100% great! She’s always been advanced there; we couldn’t keep her in her crib from 18 months because she’s learned to climb out and shimmy down the side. She had great kinetic sense, she can pick up blocks using the pressure of two other blocks, she can balance things on her feet, she can walk a balance beam and use anything nearby to climb up on a counter. She can kick and throw a ball, and is learning to catch with some success. She jumps on her bed and climbs ladders and carries things up and down stairs and dances along with music.
She loves being held upside down and knows how to shift her weight when I’m holding her to maneuver herself upside down or flip over. Seriously, if she had the receptive language I’d have her in a gymnastics or dance class now. She’d love it.
So, what about you?
I’m… for one thing, I’m busy. On top of being mom to a toddler, there are a half a dozen experts and therapists to stay in contact with, research to do, brainstorming sessions with James or my mom, activities I need to make sure happen regularly in hopes they’ll help…
And I can’t communicate with Trixie, and that makes normal mom stuff a lot harder. She’s at the age where I should be able to get away with things like “Let’s go to the doctor and we’ll get ice cream afterwards.” or “It’s bedtime, so you have to stay in bed, but you can listen to stories on your Kindle.” or “Just try one bite of carrots and you don’t need to eat any more.” ...at least sometimes.
None of that is on the table for me. If we go to the doctors, she’s going to throw a fit as soon as they start wanting her to do things she doesn’t want to (like stand on a scale.) Bedtime is a three hour ordeal, even when she’s dead tired. When I’m getting her dressed, I can’t tell her to come here, let alone as her to bring me her shirt. Literally everything she didn’t decide to do herself requires careful nonverbal negotiation or wrestling an almost three-year-old while she expresses her displeasure.
I’m also frustrated by how little I know, and how complicated the situation is. Every time I talk to a new expert, or try to talk to other parents, or, say, write a blog post, I have to go through all of these different facets, and often people still jump to incorrect conclusions. I’ve always been the type of person wary of overdiagnosis of things like ADHD and autism, but now I understand how tempting it is to just have a fucking label that excuses you from this.
And it seems like every program and therapy on offer is “tailored to my child's individual needs,” which sounds great and all, but in reality means that no one will give me the information I need in order to know if this is something I even want to get into until I’ve invested hours of time and thoroughly pissed Trixie off getting evaluated for it.
And even more than any of that, I would love to have any idea what’s going to happen.
I still love MLP. I still love writing. I still love the community here and the friends I’ve made. I’m going to be at BronyCon (I need the break.) But right now I’m trying to go easy on myself. I’m not the most dependable of ponies under the best circumstances, but I’m not in the best circumstances so I’m giving myself a pass. I hope you guys will try to do the same.
Geez, no worries on being a bit distracted from the site, Bookplayer. As a parent I feel for you, I know there's not much I can actually do to really help, but if at some point you just want to talk to another parent that's not too close but still cares, anytime you see me online, I'll be happy to shut my mouth and listen.
Sounds like you got your work cut out for you in raising Trixie.
If I see you at Bronycon, I'll tell you *all* about my twin girls and the fun we've had with them.
They're 20 now.
We're still here. We'll still be here when you get more time back. We wish you and your family well, and we'll do what we can. And if what we need to do is be patient and let you know we're still here--we'll do that.
I'm sure she'll be fine, Book. While that is a little late for a kid to not have language, you seemed to indicate she was at least making noises of some kind so presumably she isn't mute. Just... keep giving her the rocks, and hopefully she'll catch on and bang them together to make fire.
It's totally okay to pull back some to deal with everything being Everything. Family is important! Don't burn yourself out.
4576721
This. Very much this.
Trixie is lucky to have you for a mom
Hit me up on the internets any time you'd like to chat parent to parent, pony to pony, writer to writer, or any combination of the above!
You have not been a flake in the slightest. You're more like Gandalf the... Book(!
), who makes time for the people who cherish her as a friend, but must away at break of day to take care of her long-awake golden daughter. If anything, you're less a flake and more a wizard!
...That was weird.
But anyway, thank you for letting us in on what's going on. It's good to hear that you, Trixie and James are all doing well, and that things are at least happening, even if very little information is available ATM. All that I can offer is a listening ear; my experiences have exposed me to various communication problems in children, so I know a bit about them, though not nearly enough to offer any advice. I will leave you be, with the hope that things work out for you and Trixie (and James, if applicable).
Crackpot theory: She is a reincarnation of the Great and Powerful Trixie, and only knows Equestrian, not English.
We're it not for it being impossible, a weird amount of this theory fits.
It's funny, I was just wondering an hour ago what you were up to for the first time in a while.
And here we are.
I'm glad Trixie is well, even if her particular way of being well is rather odd and generally troublesome when trying to do the things most people expect of a 3-year-old.
It seems y'all are quite well prepared to have things be strange, but I certainly wish you luck nonetheless. May Trixie figure out what we're doing when we flap our gums about and make our strange noises soon.
(I never cease to be impressed with the myriad ways the human brain can defy expectation. I've heard of many kinds of developmental problems, but never a complete lack of language while still being more or less normally functioning in every other way..!)
Hi! Sorry for butting in on a personal matter but, we are dealing with a similar thing with our youngest, and we suspect him to have Adenoid hypertrophy. It is mostly something that makes it harder to breathe through the nose, but it can affect speaking, since it can make it harder to hear wowels, and that leads to late speech developments. Have you checked how she breaths? If it's mostly through the nose, and she snores, that may be a sign.
In all others aspects he isnperfectly healthy and I similed knowingly, "Yeah, that's our kid as well" through most of your blog.
4576899
I'd never heard of that, but it's certainly something to consider! She does snore; her father has severe sleep apnea and we'd considered getting a sleep study for her, but that's yet another test that we had no idea how we'd manage her through (in that case because it's so hard to get her to sleep under normal circumstances.)
In addition to that, Mary Camarata seems to think that a large part of Trixie's problem is perfectionism; that she won't engage with people because she's afraid of misunderstanding or being misunderstood, and she won't try to speak because she knows she doesn't sound "right." If something like that was making it difficult for her to get the sounds right, it would fit in with that theory.
I'll keep an eye on her and maybe add an ENT to my list of specialists to call. Thanks for your input!
Find me the guy who won't and I'll deck him.
First of all, your girl is a real cutie! And her penchant for drama is so appropriate, given her name.
Second, real life must always come first, and it goes doubly for family. I'm sure everyone here agrees that no matter how flaky or undependable you are feeling, you're doing the right thing focusing on Trixie and everything and -one else who are occupying your time.
Third, best of luck with figuring out what, if anything, is holding her back, and general well-wishes to you all!
Oh, Bookplayer. All the hugs. All of them. A full, endless complement thereof.
I hope dearly that she'll be like a cousin of mine who spoke not a syllable until he was four at which point he busted out a complete, grammatically correct sentence causing his dear ol' ma to break a considerable amount of crockery she had been washing.
It even led to a family-wide joke that his first sentence was "Oh, I say, this simply doesn't have enough salt on it." and, when asked, shocked, why he never spoke before, he, the family legend has it, replied "Hitherto, I had no complaints to make."
4576910
Does your husband use one of those machine thingies for the sleep apnea to sleep better at night?
4577096
Yup! It made a world of difference when he got it.
4577096 The machines are more for severe sleep apnea. As in, you stop breathing for seconds at a time.
Book, nobody is blaming you for being delayed, we fully understand raising a stubborn kid is tricky enough, even moreso when you're having language difficulties.
I'm no parent, but a longtime babysitter and I'm more than happy to listen and empathize if you ever need it.
If it helps any, my brother didn't start talking until he was nearly 4, and he turned out ok. His circumstance is probably different than Trixie, but just thought I'd offer some encouragement
Oh. So 4576950 comes from a family of hypercompetent cradle linguists, who express themselves in polite formalities at the earliest possible juncture.
I am so surprised by this.
My quick two cents about this, Bookplayer, is that if she's not struggling with balance or agility that's a good sign she's most likely not autistic, as I struggled with catching stuff at a young age, being autistic myself.
4576950 That's what happened to me and my Aspergers thankfully. Barely spoke until I was three and then my lexicon exploded and I was able to speak in full sentences completely. Apperently they think my brain was taking all that time to study and process language until I knew precisely what I wanted.
And also, Book, one final spam comment from my silly self. The advantage of having a label to anything that Trixie may have is ease of treatment once that label is in place. From both a medical insurance and social services standpoint, having an official label opens up a lot more doors to treatment and care.
All I can do is wish you the best, cuz I don't know nothin' about kids. :C
4576950
This is amazing.
And, if there's any truth to it, sounds like a perfectionist to me.
4577521
The cousin exists, but the first sentence wasn't as high-faultin' as all that. It was, if memory serves, "Mom, I want some juice." But I like the joke version better. :)
4577529
Your story reminds me of one of Alfred Bester's last works, a novella called "The Animal Fair." I remember reading it in chunks at the drug store magazine rack, in the early 70's.
I think you'd like it. In fact I think everyone here would like it. Bartender! A round of Alfred Bester for the house!
Personal anecdote: according to my parents, I "spoke" mainly in gibberish well into Year 3 of corporeal existence, and I'm more or less normal now (actually, since it seems immediately relevant, I tested into gifted programs pretty much the second I entered public school and stayed in them throughout). If my life's anything to go by, sometimes kids just don't hit the usual marks when they're supposed to, but ultimately end up fine.
I don't know much about kids. Is she still under warranty? Did you save the receipt?
Allegedly I didn't learn to speak until sometime after age 3, in complete sentences, not long before or possibly at the same as I began reading. My parents only found out I could read when I began using references to Bible passages I had read in arguments. I wouldn't be surprised if that was what I learned to read for.
I'm not a psychologist, but I would be more worried about her stubbornness, which might also be seen as self-centeredness. She might have no learning problems at all, but just not care much about other people.
4577371 Yes; labels are for insurance companies and doctors. Doctors today are trained not to think--that can get them sued.
I'm glad that even though things are trying you're hanging in there and doing your best for your daughter. She's lucky to have such a great mom, and we'll all be here when you're ready to return in style.
But family has to come first here. And if you need help with anything you know where to reach out to me, just ask!
Good luck with all that. I don't really have any expertise at all in this, so I can't really help beyond that.
Still, we are here, and think fondly of you.
Good luck.
PS. Not sure if you're keeping up on the horse front, but there was an episode with a lot of flashbacks to Applejack's parents which got aired early in Australia. I managed to find it and watch it. I know you know Applejack is best pony, so you might want to get around to it. I have to admit the fanfic writer in me is a bit disappointed that a long-term absence got filled, but it was alright and didn't set anything important on fire (though it was an episode which was oddly heavy on backstory; it didn't really feel like it had a moral to it).
4577201
4576950
Speaking of cradle linguists... well, let me tell you a story my mother loves to tell about me, though I have no memory of it, so I cannot guarantee its veracity. She swears up and down it is true, though, despite my skepticism.
When I was 18 months old, there was a knock on the door. My mother told me to go answer it.
So I go over to the door, and lo and behold, a group of children, all shouting "Trick or treat!"
I was very young, and had no conception of this holiday you call "Halloween". So I do what any other logically-minded, rational individual would in that situation.
I go into the living room, and declare (quite loudly):
"Mother, there are beggars at the door."
(I was subsequently very enthusiastic about the prospect of free candy once the holiday was explained to me)