Everyone who leaves me comments seems much smarter than me. So forgive me, but I have some questions. Feel free to ignore me and go, "Yeah? Well, I have questions TOO, buddy. YOU go solve your own mess. I read blogs for inspiration, NOT QUIZZES." Or, better yet, tell me some answers:
- Anyone out there well versed in LAUSD? (ie, anyone out there want to help me decipher the choices they're giving me?)
- So is soy ON or OFF the DAN! diet? (not that I'm convinced we have the stamina to even try the DAN diet, but it's not off the table, so to speak)
- Does anyone else's kid make up huge, long, creative, dramatic NEW stories every day? ("Suddenly, the rocket ship flies up, up, up into the sky...Boom! It crashed down on daddy's head. But daddy did not cry.") I'd pay you good money to explain to me how these epic preschool tales fit into the whole picture of a boy with serious language delays and deficits. The school psychologist just keeps saying, "atypical, atypical, atypical..."
- Can you give melatonin at nap time AND bed time, or just bed time?
- How do you find a decent pediatrician? Our asked the rooster to hug his sister, and when he did, he said, "See, he's not autistic." Now that is what I call sophisticated analysis.
- Speaking of questions, we go to the developmental pediatrician next week. It's a fortune (to us) for the initial evaluation ($2500!!!!) and we only managed to get in through a favor... so I want to be sure I ask good questions and get my money's worth! If anyone wants to suggest the best questions to ask... I'm all ears.
PLEASE forgive the neediness of the list. I'm just amazed by how much I don't know, and I do believe knowledge is power.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Wednesday, March 5, 2008
Wednesday, February 20, 2008
Searching for the Rooster
I've been reading blogs for weeks now, and I think that what I've really been doing is searching for the rooster to show up in one of them, or maybe I've been searching for myself. Of course, we haven't shown up in any of them, because most people like us probably have the good sense not to advertise themselves; we are a wreck, and I must be masochistic to be telling you this. In fact, stop reading this right now. Please, I'm begging you. I am not writing for YOU, anyway, unless you are me, looking for your rooster to show up in a blog, or maybe you are me searching for yourself.
Suddenly, belatedly, it hit me today that maybe if I wanted to find myself in a blog, I should write one.
In most situations, I am a pretty outstanding searcher, particularly of the Internet. I found my husband online, no less. (Also, I planned our out-of-town wedding online, and found our first place together, our first house, several Craigslist furniture gems; did I mention I got my Master's Degree online and may have located Amelia Earhart? Well, okay, the Amelia part I made up, but if I find her I'll use Google Earth to make you a map -- I'm all about the Web resources, since that Master's Degree I really did get online was in educational technology.)
But when I go looking for the rooster online, I'm at a disadvantage because I have no key words that fit just right. I've looked for him and seen his close cousins in Autismland, I've searched high and low among kin in territories of PDD-NOS, ADD ... I even scoped out something called ODD, and while the acronym and the words that comprise it sound like ones I use to describe my guy, when I read on, once again, I feel like we're a little out of place there, too.
ODD is Oppositional Defiant Disorder. For a kid with a language delay, he mastered the word NO right on time, and it continues to be his favorite refrain. He hits, pushes, screams, refuses, argues, resists -- often. But does he have a disorder of defiance? I think you'll need to check back with me when he hits his teens, but for now I'm going to say it isn't a clear fit. The rooster also shares, hugs, kisses, jokes, laughs, plays, imagines, cheers, compromises, helps, apologizes -- sometimes. When it comes to autism, I am no expert at all; before the rooster was born, I only knew of core autism, and the autistic brother of my friend had no language whatsoever. Our rooster clearly does have language. Sometimes it's "scripts," where he repeats what he's heard in a story, but usually the "script" is invisible, because what he is saying fits the situation. Only after rooster's developmental difficulties did I -- A TEACHER, no less -- set out to educate myself more about the spectrum, and scripting is something that fits on that spectrum - along with never sleeping (until we recently discovered Melatonin - hurray!), difficulty with transitions, social awkwardness, and getting stuck on certain topics. On the other hand, our rooster doesn't have some of the other clear red flags, like he doesn't line things up, require strict routines, have aversions to loud noises, avoid eye contact, flap his arms, spin around, use an unusual speaking voice, stay away from other kids, have particular requirements about his clothes, obsess about trains, freak out in public. He did, though, struggle to learn how to ask and answer questions, have trouble with pronouns... so I have no idea. He definitely has pragmatic language deficits and poor behavior at school. His teachers feel like he needs one of them with him all the time. Circle time? A nightmare. It could well be that the rooster is "on the spectrum." We have an appointment with a developmental pediatrician next month to find out.
I don't even know if the label matters much or not, except in terms of the resources it might bring with it. I just know that I've been searching, and searching, and searching... thinking to myself that if I can find someone else like the rooster, maybe I can learn from his or her story. Maybe I can invite him or her over for a play date. Maybe his or her parents can teach me how to survive, and with a sense of humor. Maybe we can have a little more sense of community, instead of too often hunkering down in our home, exhausted, scared, overwhelmed, unsure, unsteady, alone. Already I've felt less isolated with each blog I've read by parents, like me, trying to find their way. The worst thing I've learned from the blogs of moms I've read this month is this: everyone is nicer than I am, and more patient, and stronger. I'm trying to learn from your examples, you moms who go before me, but sometimes, as the rooster knows, the birds eat the bread crumbs.
I don't know who my son, the rooster, is exactly. Neither do his teachers or his doctors, of which he has a zillion. (I don't think he's been healthy and well for longer than a couple days at a time since he was three months old, and surely that can't help a child's development.) We love our rooster, we enjoy him whenever we can, but we don't know exactly who he is inside those gorgeous eyes and under that thick blonde mop. So, I am now doing what I usually do when the resources on hand come up empty - I am broadening my scope, and seeking out community on the Internet.
I have a strong suspicion that if I write about the rooster, someone reading it will help me figure things out a little better than I have so far. And I won't even rule out the possibility that I will be that someone.
Suddenly, belatedly, it hit me today that maybe if I wanted to find myself in a blog, I should write one.
In most situations, I am a pretty outstanding searcher, particularly of the Internet. I found my husband online, no less. (Also, I planned our out-of-town wedding online, and found our first place together, our first house, several Craigslist furniture gems; did I mention I got my Master's Degree online and may have located Amelia Earhart? Well, okay, the Amelia part I made up, but if I find her I'll use Google Earth to make you a map -- I'm all about the Web resources, since that Master's Degree I really did get online was in educational technology.)
But when I go looking for the rooster online, I'm at a disadvantage because I have no key words that fit just right. I've looked for him and seen his close cousins in Autismland, I've searched high and low among kin in territories of PDD-NOS, ADD ... I even scoped out something called ODD, and while the acronym and the words that comprise it sound like ones I use to describe my guy, when I read on, once again, I feel like we're a little out of place there, too.
ODD is Oppositional Defiant Disorder. For a kid with a language delay, he mastered the word NO right on time, and it continues to be his favorite refrain. He hits, pushes, screams, refuses, argues, resists -- often. But does he have a disorder of defiance? I think you'll need to check back with me when he hits his teens, but for now I'm going to say it isn't a clear fit. The rooster also shares, hugs, kisses, jokes, laughs, plays, imagines, cheers, compromises, helps, apologizes -- sometimes. When it comes to autism, I am no expert at all; before the rooster was born, I only knew of core autism, and the autistic brother of my friend had no language whatsoever. Our rooster clearly does have language. Sometimes it's "scripts," where he repeats what he's heard in a story, but usually the "script" is invisible, because what he is saying fits the situation. Only after rooster's developmental difficulties did I -- A TEACHER, no less -- set out to educate myself more about the spectrum, and scripting is something that fits on that spectrum - along with never sleeping (until we recently discovered Melatonin - hurray!), difficulty with transitions, social awkwardness, and getting stuck on certain topics. On the other hand, our rooster doesn't have some of the other clear red flags, like he doesn't line things up, require strict routines, have aversions to loud noises, avoid eye contact, flap his arms, spin around, use an unusual speaking voice, stay away from other kids, have particular requirements about his clothes, obsess about trains, freak out in public. He did, though, struggle to learn how to ask and answer questions, have trouble with pronouns... so I have no idea. He definitely has pragmatic language deficits and poor behavior at school. His teachers feel like he needs one of them with him all the time. Circle time? A nightmare. It could well be that the rooster is "on the spectrum." We have an appointment with a developmental pediatrician next month to find out.
I don't even know if the label matters much or not, except in terms of the resources it might bring with it. I just know that I've been searching, and searching, and searching... thinking to myself that if I can find someone else like the rooster, maybe I can learn from his or her story. Maybe I can invite him or her over for a play date. Maybe his or her parents can teach me how to survive, and with a sense of humor. Maybe we can have a little more sense of community, instead of too often hunkering down in our home, exhausted, scared, overwhelmed, unsure, unsteady, alone. Already I've felt less isolated with each blog I've read by parents, like me, trying to find their way. The worst thing I've learned from the blogs of moms I've read this month is this: everyone is nicer than I am, and more patient, and stronger. I'm trying to learn from your examples, you moms who go before me, but sometimes, as the rooster knows, the birds eat the bread crumbs.
I don't know who my son, the rooster, is exactly. Neither do his teachers or his doctors, of which he has a zillion. (I don't think he's been healthy and well for longer than a couple days at a time since he was three months old, and surely that can't help a child's development.) We love our rooster, we enjoy him whenever we can, but we don't know exactly who he is inside those gorgeous eyes and under that thick blonde mop. So, I am now doing what I usually do when the resources on hand come up empty - I am broadening my scope, and seeking out community on the Internet.
I have a strong suspicion that if I write about the rooster, someone reading it will help me figure things out a little better than I have so far. And I won't even rule out the possibility that I will be that someone.
Subscribe to:
Posts (Atom)
