I read a great FAQ at joeyandmom.blogspot.com, so with many thanks to the author for posting the info about her kiddo, I am going to do the same...after all, so many of us our looking to find out, "Is there someone else like my child? What works and what doesn't?" I've so appreciated the bread crumbs, I am happy to leave a trail, too, if it helps.
What is the rooster's diagnosis?
Check back late March and maybe we'll know something, but if you want me to armchair quarterback, I'd say the rooster has pervasive developmental delay. Or semantic pragmatic language disorder. Or kind of a mix, with a scoop of ADD thrown in maybe. Hey, my degree is in journalism -- you better wait until late March.
How did you know something was wrong?
Gut. Things just never got any easier, and the reasons we gave ourselves (he's a newborn, he has colic, he's had so many colds, he has the terrible twos early, now he's two, it's really the terrible threes) stopped being good enough when we really watched him with other kids his own age. The rooster was born hard. He took 32 hours of labor, four of pushing, and two vacuum assists. The nurses came running with our boy a few hours later to let us know he was keeping up all the other babies and pounding down formula like a frat boy at a keg party, so they were kicking him out. (I went on to breastfeed him for six months, the formula was because neither of us had had any nutrition in over 40 hours so they felt he needed some.) The rooster has never slept well, has never had good muscle tone, and has suffered a slew of issues his doctors refer to as a "constellation." Among them he struggled with torticollis (head tilt), strabismus (lazy eye), hypotonia (weak muscles), chronic upper respiratory problems (vast quantities of boogers, and a cough that made doctors suspect, before ruling out, cystic fibrosis). We visit the doctor so much they ought to give us our own parking space. Also, the rooster has been delayed - though often not by much - with milestones, he shows some very mild sensory integration issues (do NOT take this kid to a barber unless you know your wrestling holds) and his language is, to be purely scientific about the whole thing, WEIRD. Call him on the phone and try to chat with him if you think you can come up with a better description.
Do you think vaccines caused the rooster's problems? I am going with no. Can't handle the regret of anything else. I reserve the right to revisit this, though because I'm woefully underinformed.
What interventions have you implemented? When he was tiny, we got him OT and PT for his torticollis and hypotonia. That helped with sensory stuff too. He responded well. He's had nebulizers for the respiratory stuff and more drugs than Robert Downey Jr., but he still always seems sick, and the doctors have run out of ideas (except for one, which is a whole other blog I need to save for later). He had eye surgery in January, and for the first time in his LIFE, he holds his head straight up. The IEP was today, and they offered lots of choices, all crappy unless I quit my job and drive him hither and yon, so we're in "recess" while we figure out our plan.
Is anyone else in your family like the rooster? No. I don't know of any neurological issues in my family or my husband's. But I didn't really know my father or any of his family, and my mom only describes them as "impossible" so who knows. Really, it would shock me if anyone else seemed much like the rooster. We have met with zillions of "ists" and I always ask them, and his teachers, "Have you ever known anyone like our rooster?" After the awkward pause, they usually say something along these lines: "Not exactly. Well, no. Not really. I mean... but... no."
You work at a great school. Can't they help?
Yes, and no. They help a lot. My colleagues are my support system. They love our rooster. They just can't figure out how to teach him successfully. As the school district folks put it at our IEP meeting, "He is not functioning in the classroom. His severe pragmatic issues especially stand in the way." In other words, rooster does not sing along to the songs, he needs a lap to sit on if he has any chance of making it through any amount of circle time, no way is he going to follow verbal directions, if you let him out of your site he might do something unsafe (like climb a ladder belonging to the maintenance crew), and the kids have no idea what to make of his attempts at conversation. That's a lot for a mainstream school to handle, even for a faculty child.
Is there any good news?
Well, you know I'm not a fan of "bright sidedness" but I tell you emphatically there is good news about our boy. He is gorgeous, in my unbiased and humble opinion, with a smile that makes you want to giggle like Elmo. Give him a book and he can sit for up to 25 happy minutes, making up the story by himself if you won't read it to him. Many times when we despair that he simply cannot learn to do something no matter how much we practice (like ask or answer a Wh question), a week later he proves us wrong. He loves us and he says so in words, in bear hugs, in sloppy drooly kisses, and with squeals of delight. He's finally starting to get along with Peaches, and sometimes they play together happily before the crying starts. Though I fret a lot about his behavior, when you take him to a place with loud upbeat music activity, such as the drum circle we attend, he gets all blissed out, and he behaves beautifully. For about 45 minutes. I'll take it. I live for those times - for his rare successful outings, his relaxation, his ease. There are no "normal" days for us -- each one is a surprising new challenge -- but I treasure them all, and despite blog evidence to the contrary, I am very grateful - because whoever he is, whatever he's "got," in the end he is my precious rooster.
Friday, February 29, 2008
nightmares
The rooster went through a long and heartbreaking period of night terrors and nightmares when he was two, but he's only had a few of those in his three year old year. When he has them, I always find myself wondering if it's about something I did or could have controlled. Like after he had his tonsils out, and later when he had eye surgery, he had terrible sleep for a while, and maybe somehow I could have made it all less scary. Or maybe he heard something on the radio when I was listening to NPR. (I know segments about our president often give me nightmares even with my eyes wide open.) Or maybe he's replaying when I was just being an overtired *itch who sometimes forgets how hard things are for a rooster, who sometimes expects too much for a boy with few coping skills of his own.
Last night I had some nightmares of my own -- another reflection of my guilt, the theme du jour. For about eight or nine years, I taught fifth grade. I stopped to switch to technology integration the year before rooster was born. I used to think I was pretty good at teaching fifth grade. What I think about now is that I shouldn't have been teaching fifth grade. I should have been teaching children. All night I had nightmares about the kids I might have reached better than I did -- NO, the parents of the kids I should have reached better than I did. Can you tell our IEP meeting is today?!
There were a handful of kids I taught who, despite pretty successfully managing their issues and largely integrated into our community, I thought might be "in the wrong school" for their "unique issues." HA - I know; are you throwing rotten tomatoes at your screen? Are you even still reading me?
I remember ignorantly wondering -- can I really admit this on the web? -- if their parents ought to try harder to find "the best place" for these kids. Either their processing skills were painfully, painfully slow, a year or two or three behind their peers, or they could not put a pencil to paper to create a coherent sentence without substantial support, or some other such thing that I now realize was really just ... well ... what I should have been supporting them through without questioning their school placement. Now, while I am confessing my ignorance, please don't think I didn't do what I thought at the time was busting my butt to support those boys and girls. I encouraged, modified, supported, loved, cheered, adapted, struggled, and LOVED little S, SS, T, C, D, N, and O. Their self esteem mattered as much to me as anything else, and I sought to protect it as if it were my own. They did learn in my class, and they did struggle along the way. I have treasured cards and love notes they gave me in June.
But I also sat in parent conferences and tried to gently (I thought) suggest that maybe the parents were not doing what was in the child's best interest by pushing them along in our competitive, intense private school. Now, I'm getting my own tomato. Young and foolish; is it really any excuse?
To the parents of S, SS, T, C, D, N and O (all of whom graduated from our school): I regret ever judging anything about your experience, or making your school decisions any more challenging. Many of you said you appreciated my efforts, but if you wondered to yourself if I'd ever learn my lesson the hard way about how hard parenting a struggling student can be, rest assured. And know that I am not resting assured. If I could go back, I would do better.
I hear a little boy waking up now after a good night's rest. Could there be any better way to end a blog?
Last night I had some nightmares of my own -- another reflection of my guilt, the theme du jour. For about eight or nine years, I taught fifth grade. I stopped to switch to technology integration the year before rooster was born. I used to think I was pretty good at teaching fifth grade. What I think about now is that I shouldn't have been teaching fifth grade. I should have been teaching children. All night I had nightmares about the kids I might have reached better than I did -- NO, the parents of the kids I should have reached better than I did. Can you tell our IEP meeting is today?!
There were a handful of kids I taught who, despite pretty successfully managing their issues and largely integrated into our community, I thought might be "in the wrong school" for their "unique issues." HA - I know; are you throwing rotten tomatoes at your screen? Are you even still reading me?
I remember ignorantly wondering -- can I really admit this on the web? -- if their parents ought to try harder to find "the best place" for these kids. Either their processing skills were painfully, painfully slow, a year or two or three behind their peers, or they could not put a pencil to paper to create a coherent sentence without substantial support, or some other such thing that I now realize was really just ... well ... what I should have been supporting them through without questioning their school placement. Now, while I am confessing my ignorance, please don't think I didn't do what I thought at the time was busting my butt to support those boys and girls. I encouraged, modified, supported, loved, cheered, adapted, struggled, and LOVED little S, SS, T, C, D, N, and O. Their self esteem mattered as much to me as anything else, and I sought to protect it as if it were my own. They did learn in my class, and they did struggle along the way. I have treasured cards and love notes they gave me in June.
But I also sat in parent conferences and tried to gently (I thought) suggest that maybe the parents were not doing what was in the child's best interest by pushing them along in our competitive, intense private school. Now, I'm getting my own tomato. Young and foolish; is it really any excuse?
To the parents of S, SS, T, C, D, N and O (all of whom graduated from our school): I regret ever judging anything about your experience, or making your school decisions any more challenging. Many of you said you appreciated my efforts, but if you wondered to yourself if I'd ever learn my lesson the hard way about how hard parenting a struggling student can be, rest assured. And know that I am not resting assured. If I could go back, I would do better.
I hear a little boy waking up now after a good night's rest. Could there be any better way to end a blog?
Thursday, February 28, 2008
Positivity
Positivity. If you came here looking for some, you've come to the wrong blog. Please use your browser accordingly, and I'll see you next time.
Today, I'm in a place I visit from time to time, called Positivity Sucks.
Now, before you go telling me about the power of positive thinking -- which is crap, and you know it -- let me explain that I'm not wallowing in negativity, I'm not itching for a fight, I only have one foot in the pity party, and I don't mean to offend anyone with the rant I am about to unleash on "the bright side."
Oh, sure, I'll take a "It'll be okay" any day. Those are always welcome. But, and I say this with all due respect, there are people out there whose "bright side" is just GLARINGLY artificial, like mall lighting. And I'm so tired, so tired, so tired, that I need to flip the switch off on those people just now. I did, after all, start my day at 3:30 a.m., and the bright siders, I feel confident, did not.
Who are these bright siders? No, not you... of course not you. But the bright siders are a lot like us. Good people. Nice people. Well intentioned. I love them. But if I say that a pit bull latched on to my foot and so I'm going to have to have it amputated and the insurance company refuses to pay for anesthesia and my doctor speaks only Swahili so I'm having panic attacks so bad before the appointments that I'm on the other line with a hot line so I don't just end it all, bright siders say, "Oh, isn't it just wonderful that you have another foot! I'm so glad. At least you have a doctor, not everybody has one. Thanks for calling. Thanks for letting me know you're okay. That's GREAT! Kiss kiss!"
I just sometimes need to say that what sucks, sucks. Yes, there are suckier things. Yes, other people have sucky and suckier things. Yes, I have good things, wondrous magical things too. I am appreciative, I am grateful, I am loving, I am passionate. And tired. False positivity is the salt in the cracks of a forced smile.
If your preschooler is NT, the picture of health, and right now cheerfully coloring you a picture while singing "If you're happy and you know it..." but your husband forgot your birthday, your boss nixed your raise, your car broke down on the 405, and you're waiting for scary test results from your obgyn, I am not going to tell you, "Yeah, but your kid is easier than mine is." Ain't got nothing to do with the price of tea in China. You are entitled to say, in my humble opinion, that what sucks, sucks. In fact, I'll just listen, read your blog if you've got one, and suggest you start one if you don't. I'll tell you two truths: 1. It'll be alright. 2. But it really does suck right now.
And that's as positive as you're going to get from me tonight.
Today, I'm in a place I visit from time to time, called Positivity Sucks.
Now, before you go telling me about the power of positive thinking -- which is crap, and you know it -- let me explain that I'm not wallowing in negativity, I'm not itching for a fight, I only have one foot in the pity party, and I don't mean to offend anyone with the rant I am about to unleash on "the bright side."
Oh, sure, I'll take a "It'll be okay" any day. Those are always welcome. But, and I say this with all due respect, there are people out there whose "bright side" is just GLARINGLY artificial, like mall lighting. And I'm so tired, so tired, so tired, that I need to flip the switch off on those people just now. I did, after all, start my day at 3:30 a.m., and the bright siders, I feel confident, did not.
Who are these bright siders? No, not you... of course not you. But the bright siders are a lot like us. Good people. Nice people. Well intentioned. I love them. But if I say that a pit bull latched on to my foot and so I'm going to have to have it amputated and the insurance company refuses to pay for anesthesia and my doctor speaks only Swahili so I'm having panic attacks so bad before the appointments that I'm on the other line with a hot line so I don't just end it all, bright siders say, "Oh, isn't it just wonderful that you have another foot! I'm so glad. At least you have a doctor, not everybody has one. Thanks for calling. Thanks for letting me know you're okay. That's GREAT! Kiss kiss!"
I just sometimes need to say that what sucks, sucks. Yes, there are suckier things. Yes, other people have sucky and suckier things. Yes, I have good things, wondrous magical things too. I am appreciative, I am grateful, I am loving, I am passionate. And tired. False positivity is the salt in the cracks of a forced smile.
If your preschooler is NT, the picture of health, and right now cheerfully coloring you a picture while singing "If you're happy and you know it..." but your husband forgot your birthday, your boss nixed your raise, your car broke down on the 405, and you're waiting for scary test results from your obgyn, I am not going to tell you, "Yeah, but your kid is easier than mine is." Ain't got nothing to do with the price of tea in China. You are entitled to say, in my humble opinion, that what sucks, sucks. In fact, I'll just listen, read your blog if you've got one, and suggest you start one if you don't. I'll tell you two truths: 1. It'll be alright. 2. But it really does suck right now.
And that's as positive as you're going to get from me tonight.
Wednesday, February 27, 2008
IEP Spells...
Okay, I'm more fried even than usual today, and I can feel the dread monuting as we inch toward Friday -- our first IEP with the school district. They faxed over the 30 page document at my request so I could have it before we meet. I thought I was steeled, but still. Wow. Did they meet the same rooster I live with? I am the one who has been saying over and over that something is not quite right, I am the one who wanted people to help me figure out what that something is, but this report doesn't sound much like my boy at all. (In fact, in one whole section, they referred to some other kid. They called him by the right name, but last time I checked, he doesn't live in a Spanish speaking home with his mother and her adult male companion -- either my husband or I definitely would have noticed that, as well as the six year old they mentioned. I called to tell them they had the wrong kid, but they only changed that one paragraph, claiming the rest was really about the rooster.)
It's all backward! I'm amazed! Shocked! Stunned! And I thought I'd prepared for anything. Ha. So, forgive my addled, overtired, punch drunk, frazzled inclination, but I've decided to blog tonight about alternative meanings of "IEP." For fun. Or something. I'm sure I'm not the first to want to rewrite IEPs.
Go ahead, send me yours.
IEP stands for...
It Exacerbates Problems
Idiotic Educational Politics
It'll End Poorly
Incorrect Endless Postulations
Ignoring Exceptional People
IQs Estimated Poorly
Ineffectual Elementary Prose
I'm Enraged, People!
I Expected Professionalism
It's all backward! I'm amazed! Shocked! Stunned! And I thought I'd prepared for anything. Ha. So, forgive my addled, overtired, punch drunk, frazzled inclination, but I've decided to blog tonight about alternative meanings of "IEP." For fun. Or something. I'm sure I'm not the first to want to rewrite IEPs.
Go ahead, send me yours.
IEP stands for...
It Exacerbates Problems
Idiotic Educational Politics
It'll End Poorly
Incorrect Endless Postulations
Ignoring Exceptional People
IQs Estimated Poorly
Ineffectual Elementary Prose
I'm Enraged, People!
I Expected Professionalism
Tuesday, February 26, 2008
Neophyte
I want to thank those of you regulars in the blog scene who have gone out of your way to welcome me, the newbie. Thank you for your time and your words! BIG thank yous. Big!
Like a freshman, I feel AWKWARD. I came to this dance rather weary and insecure, looking for a place to fit in, some good company and some relaxation, but I stood in the corner just watching for a while first not sure I belonged. When I saw MOM-NOS and This Mom modeling how to find the beat and circulate, I tentatively inched away from the wall, and eventually started tapping my foot along. Kindly, This Mom pointed and said, "Look at the new girl! Be nice and say hello!"
I'm learning so much. You know I don't know if I've EVER heard a Dierks Bentley (sp?) song before, but later, I plan to put some on and imagine my rooster and MOM-NOS' Bud rocking out. Not to mention what I'm learning about hope, strength, attitude, perspective.
Anyway, I just want to let anyone kind enough to take the time to read and/or comment on my experiences (bad metaphors and all) how much it helps me; I'm still so new that I tried to reply to each of your comments and I botched it completely. You would never ever guess, would you, that I work in educational technology. Well, part of teaching is learning, and trial and error is part of that.
I am reading more than I am writing these last few days, and it humbles me mightily. If I get quiet, it's because I'm spending time learning from Nik's mom and Gretchen and the Monkey's mom and .... and not to mention what I'm learning from the kids ... well, we are a LARGE club of lucky but challenged families, aren't we? I didn't realize how large. Can you imagine if we organized one giant play date? Oh, yeah, I guess the kids could come too...
Like a freshman, I feel AWKWARD. I came to this dance rather weary and insecure, looking for a place to fit in, some good company and some relaxation, but I stood in the corner just watching for a while first not sure I belonged. When I saw MOM-NOS and This Mom modeling how to find the beat and circulate, I tentatively inched away from the wall, and eventually started tapping my foot along. Kindly, This Mom pointed and said, "Look at the new girl! Be nice and say hello!"
I'm learning so much. You know I don't know if I've EVER heard a Dierks Bentley (sp?) song before, but later, I plan to put some on and imagine my rooster and MOM-NOS' Bud rocking out. Not to mention what I'm learning about hope, strength, attitude, perspective.
Anyway, I just want to let anyone kind enough to take the time to read and/or comment on my experiences (bad metaphors and all) how much it helps me; I'm still so new that I tried to reply to each of your comments and I botched it completely. You would never ever guess, would you, that I work in educational technology. Well, part of teaching is learning, and trial and error is part of that.
I am reading more than I am writing these last few days, and it humbles me mightily. If I get quiet, it's because I'm spending time learning from Nik's mom and Gretchen and the Monkey's mom and .... and not to mention what I'm learning from the kids ... well, we are a LARGE club of lucky but challenged families, aren't we? I didn't realize how large. Can you imagine if we organized one giant play date? Oh, yeah, I guess the kids could come too...
Monday, February 25, 2008
I Have Two Boosties
Sometimes when my husband has both kids in his lap or arms, he joyously tosses back his head and proclaims, "I have TWO boosties!" Don't ask me how we came to call them boosties -- I think I've explained often enough that sleep deprivation leads us to all kinds of weirdness.
But does anyone forget I have two? I mean, does it seem like the Peaches gets overlooked for being neuro typical? (And should I knock on some wood or something? Because I know the deities don't like it when I assume a positive stance... maybe I should say that, so far, Peaches seems to our untrained eyes as being mostly neuro typical...)
I adore my kids - BOTH of them. I spend equal time with them, make sure Santa doles out equitable shares from his big red bag, set the same rules around the house. I talk to them equally, but I realize I talk about them in unequal amounts. The rooster gets more. But the fact is it often seems like the rooster needs more. So is that fair? I often come back to a speaker we had a school several years back, before I was married or had kids. He stuck with me when he said, "A common misconception is that fairness means giving all kids the same thing. Fairness means giving each child what that child needs." I get it, but sometimes I feel guilty anyway. I guess it's a parent's job to figure out what each child needs. And to provide it. And to feel guilty.
Peaches is home sick today. It is the first time I can remember that she caught a widely circulating virus BEFORE her brother. I kept feeling the rooster's head in disbelief. Cool as a cucumber. Peaches is the one with glassy eyes, a runny nose, and a warm head. Huh. I have to pay close attention when I go to get her some Tylenol so that I remember to administer HER dose, based on HER weight. The rooster went off to school with his dad, and Peaches and I are at home, a little in shock, secretly a little relieved at the prospect of getting some quiet time; we have slept even less than usual, and that is saying something.
I am the youngest of two children, myself. I have an older brother with whom I have never gotten along, and I mean to tell you he has abhorred the site of me since I came home from the hospital, and 36 years later he's steeped in his complete contempt for me. I can't really say exactly why -- I guess only he can -- but I do know that I was a voracious reader from the time I was about four, and since he was nine at that time, he didn't particularly enjoy hearing all the adults remark, "Look at that! She reads better than her big brother! She's so smart-- ahh, what a joy." I was the reader, and the writer - he was the fighter.
It would certainly be hypocritical of me to assume my kids will become best friends, or even get along well, but while I'm trying to figure out how to treat them both fairly, I want to try to give them a fair shake at a relationship. I'm trying hard not to let them feel compared, I'm trying hard to reduce the sense of competition between them, I'm trying hard to resist labels that might become assumptions and pigeon holes.
I have two boosties, and I have no idea what I'm doing, but I'm trying hard.
But does anyone forget I have two? I mean, does it seem like the Peaches gets overlooked for being neuro typical? (And should I knock on some wood or something? Because I know the deities don't like it when I assume a positive stance... maybe I should say that, so far, Peaches seems to our untrained eyes as being mostly neuro typical...)
I adore my kids - BOTH of them. I spend equal time with them, make sure Santa doles out equitable shares from his big red bag, set the same rules around the house. I talk to them equally, but I realize I talk about them in unequal amounts. The rooster gets more. But the fact is it often seems like the rooster needs more. So is that fair? I often come back to a speaker we had a school several years back, before I was married or had kids. He stuck with me when he said, "A common misconception is that fairness means giving all kids the same thing. Fairness means giving each child what that child needs." I get it, but sometimes I feel guilty anyway. I guess it's a parent's job to figure out what each child needs. And to provide it. And to feel guilty.
Peaches is home sick today. It is the first time I can remember that she caught a widely circulating virus BEFORE her brother. I kept feeling the rooster's head in disbelief. Cool as a cucumber. Peaches is the one with glassy eyes, a runny nose, and a warm head. Huh. I have to pay close attention when I go to get her some Tylenol so that I remember to administer HER dose, based on HER weight. The rooster went off to school with his dad, and Peaches and I are at home, a little in shock, secretly a little relieved at the prospect of getting some quiet time; we have slept even less than usual, and that is saying something.
I am the youngest of two children, myself. I have an older brother with whom I have never gotten along, and I mean to tell you he has abhorred the site of me since I came home from the hospital, and 36 years later he's steeped in his complete contempt for me. I can't really say exactly why -- I guess only he can -- but I do know that I was a voracious reader from the time I was about four, and since he was nine at that time, he didn't particularly enjoy hearing all the adults remark, "Look at that! She reads better than her big brother! She's so smart-- ahh, what a joy." I was the reader, and the writer - he was the fighter.
It would certainly be hypocritical of me to assume my kids will become best friends, or even get along well, but while I'm trying to figure out how to treat them both fairly, I want to try to give them a fair shake at a relationship. I'm trying hard not to let them feel compared, I'm trying hard to reduce the sense of competition between them, I'm trying hard to resist labels that might become assumptions and pigeon holes.
I have two boosties, and I have no idea what I'm doing, but I'm trying hard.
Sunday, February 24, 2008
Slowing Down
My husband took note of a magnet I used to have on my refrigerator that said, "God, grant me patience -- and hurry up."
The school psychologist at the school where I work and the rooster attends told me the other day, "I don't think we are going to really figure out what is going on with him until he is seven or eight. But, on the other hand, we can't afford to wait that long to help him." Quite a little conundrum, that.
I fly at it all like some kind of corporate raider trying to sneak in fast and take over; the company is on shaky footing? Let me manage things and turn it all around! Except for about two dozen minor problems with that plan, not the least of which is that I have not a clue where to begin, and neither do the "experts" I keep running to as fast as our stroller will roll. Only rushing does no good; our rooster seems to be on his own unique clock.
Sometimes I get rattled by the fact that my husband doesn't race around life at the pace I do, but in this case, I'm the one who is out of synch. He just gets down on the floor with the rooster, no matter what chaos has just taken place, and he slowly addresses it. No rush to judgment, no expedited fix-it plan, just good, calm, slow dialogue eye-to-eye with the rooster boy. I'm trying very hard to learn from this, though clearly I am a hard case, as I've had that magnet going on eight years now with no measurable signs of improvement.
Yesterday, I lost my patience for probably the tenth time that day, and the rooster, who had been taunting his sister and stealing fruit out of the fridge after I'd said he'd had enough, came up to me with his preschool wisdom, plus some scripts he's picked up from two surgeries and four years of doctors. "Mommy? You okay? You need to breathe deep mommy. Breeaathe deeeeeeep. You breathe? Ahhhh. Breathe mommy." What could I do? Both Peaches and I looked at him, and at each other, and we both followed along, and took some long, slow, deep breaths.
There is a lot of work ahead of us, and it's not all for the rooster to do -- there is plenty of learning and adjusting to go around.
The school psychologist at the school where I work and the rooster attends told me the other day, "I don't think we are going to really figure out what is going on with him until he is seven or eight. But, on the other hand, we can't afford to wait that long to help him." Quite a little conundrum, that.
I fly at it all like some kind of corporate raider trying to sneak in fast and take over; the company is on shaky footing? Let me manage things and turn it all around! Except for about two dozen minor problems with that plan, not the least of which is that I have not a clue where to begin, and neither do the "experts" I keep running to as fast as our stroller will roll. Only rushing does no good; our rooster seems to be on his own unique clock.
Sometimes I get rattled by the fact that my husband doesn't race around life at the pace I do, but in this case, I'm the one who is out of synch. He just gets down on the floor with the rooster, no matter what chaos has just taken place, and he slowly addresses it. No rush to judgment, no expedited fix-it plan, just good, calm, slow dialogue eye-to-eye with the rooster boy. I'm trying very hard to learn from this, though clearly I am a hard case, as I've had that magnet going on eight years now with no measurable signs of improvement.
Yesterday, I lost my patience for probably the tenth time that day, and the rooster, who had been taunting his sister and stealing fruit out of the fridge after I'd said he'd had enough, came up to me with his preschool wisdom, plus some scripts he's picked up from two surgeries and four years of doctors. "Mommy? You okay? You need to breathe deep mommy. Breeaathe deeeeeeep. You breathe? Ahhhh. Breathe mommy." What could I do? Both Peaches and I looked at him, and at each other, and we both followed along, and took some long, slow, deep breaths.
There is a lot of work ahead of us, and it's not all for the rooster to do -- there is plenty of learning and adjusting to go around.
Saturday, February 23, 2008
Unspoiled
We don't have a diagnosis for our rooster yet, for what his doctors and "ists" call "a constellation of issues."
Today, we took Peaches and the rooster for a quick trip to KMart to buy some cheap spare sneakers for him, since he usually has a wet or dirty pair just when we need to go somewhere. Last time we were there we didn't manage to get the shoes because it was Valentine's Day and as soon as the kids spotted the balloons, we were done. We spent ten bucks on a balloon that sang, just to have the rooster insist we "let it go free!" as soon as we got home. (Anyone familiar with Jamie Lee Curtis' book "Where Do Balloons Go When You Let Them Go Free?" knows exactly where the rooster gets his inspiration.) Today, with no exciting holidays on the horizon, we went in and made a bee-line straight for shoes, but of course they were having a sale, so we were forced to pass by, of all things, you guessed it, balloons. These were just plain pastel ones on simple strings, so Peaches couldn't have cared less this time, but the rooster? Well, for some reason we decided to plow on.
"No, rooster, those balloons are not for sale. They are for decoration. Look at them and enjoy them with your eyes. Then, let's buy some cool SUPER MAN SHOES! OR, LOOK, SPONGE BOB SHOES! DON'T YOU JUST LOVE THESE SPONGE BOB SHOES?"
Just then, a woman tried to make her way down the aisle, between our two carts filled with our two wonderful offspring. "Excuse me," I said, moving Peaches' cart out of her way. "No problem," she said, smiling at the well behaved little girl, and then turning her attention on my inconsolable boy, still screaming his balloon demands. Her face the picture of disdain, she proclaimed, "Is he spoiled or what? Whooooheeeee! Yes, you are SPOILED. Mmmmm Uhmmm...." and she pushed her way through and disappeared.
As quickly as it played out, another mom's blog was reading itself aloud in my head, a blog I'd read a few months back by the mom of a boy she calls her monkey. She had written about the clerk in the grocery store who tsked at the monkey for standing in a cart. And there was another one about a boy on the spectrum getting dirty looks for listening to an ipod... how many kids with special needs have received intrusive, know-it-all looks or comments from the ignorant people in their midst? So in one of the blogs I'd read, the mom said, "He's autistic," and shut that critic right up.
I had a split second in which I thought of this before the KMart Witch vanished on her broom stick, but no words came to me. None had the assurance or the diagnosis that packed punch; I don't think I'm ready to pronounce the rooster autistic before a doctor does. I don't know, does this sound like a snappy comeback to you? "No, he's not spoiled, he's POSSIBLY-GOT-PERVASIVE-DEVELOPMENTAL-DELAY-NOT-OTHERWISE-SPECIFIED-OR SOME-OTHER-THING-ON-THE-AUTISM-SPECTRUM, now kiss my balloons, you witch!"
Hey, I understand and usually empathize when people lose their patience with the rooster. He's hard! But he cost her nothing, and the public finger pointing at our whole family certainly didn't make our daily parenting challenges any easier. To her, he was a tantrum throwing 3 and a half year old boy getting on her nerves. To him, he was being forced to sit strapped into a cart surrounded by his favorite objects floating just out of reach, while his parents insisted he look at shoes -- boring SHOES! -- while every urge in his impulsive body rebelled.
We made it out with a pair of black pirate sneakers, some righteous indignation, and no balloon.
We might not have a diagnosis yet, but there are a few possible ones we've completely discarded, and SPOILED is at the top of the list.
Today, we took Peaches and the rooster for a quick trip to KMart to buy some cheap spare sneakers for him, since he usually has a wet or dirty pair just when we need to go somewhere. Last time we were there we didn't manage to get the shoes because it was Valentine's Day and as soon as the kids spotted the balloons, we were done. We spent ten bucks on a balloon that sang, just to have the rooster insist we "let it go free!" as soon as we got home. (Anyone familiar with Jamie Lee Curtis' book "Where Do Balloons Go When You Let Them Go Free?" knows exactly where the rooster gets his inspiration.) Today, with no exciting holidays on the horizon, we went in and made a bee-line straight for shoes, but of course they were having a sale, so we were forced to pass by, of all things, you guessed it, balloons. These were just plain pastel ones on simple strings, so Peaches couldn't have cared less this time, but the rooster? Well, for some reason we decided to plow on.
"No, rooster, those balloons are not for sale. They are for decoration. Look at them and enjoy them with your eyes. Then, let's buy some cool SUPER MAN SHOES! OR, LOOK, SPONGE BOB SHOES! DON'T YOU JUST LOVE THESE SPONGE BOB SHOES?"
Just then, a woman tried to make her way down the aisle, between our two carts filled with our two wonderful offspring. "Excuse me," I said, moving Peaches' cart out of her way. "No problem," she said, smiling at the well behaved little girl, and then turning her attention on my inconsolable boy, still screaming his balloon demands. Her face the picture of disdain, she proclaimed, "Is he spoiled or what? Whooooheeeee! Yes, you are SPOILED. Mmmmm Uhmmm...." and she pushed her way through and disappeared.
As quickly as it played out, another mom's blog was reading itself aloud in my head, a blog I'd read a few months back by the mom of a boy she calls her monkey. She had written about the clerk in the grocery store who tsked at the monkey for standing in a cart. And there was another one about a boy on the spectrum getting dirty looks for listening to an ipod... how many kids with special needs have received intrusive, know-it-all looks or comments from the ignorant people in their midst? So in one of the blogs I'd read, the mom said, "He's autistic," and shut that critic right up.
I had a split second in which I thought of this before the KMart Witch vanished on her broom stick, but no words came to me. None had the assurance or the diagnosis that packed punch; I don't think I'm ready to pronounce the rooster autistic before a doctor does. I don't know, does this sound like a snappy comeback to you? "No, he's not spoiled, he's POSSIBLY-GOT-PERVASIVE-DEVELOPMENTAL-DELAY-NOT-OTHERWISE-SPECIFIED-OR SOME-OTHER-THING-ON-THE-AUTISM-SPECTRUM, now kiss my balloons, you witch!"
Hey, I understand and usually empathize when people lose their patience with the rooster. He's hard! But he cost her nothing, and the public finger pointing at our whole family certainly didn't make our daily parenting challenges any easier. To her, he was a tantrum throwing 3 and a half year old boy getting on her nerves. To him, he was being forced to sit strapped into a cart surrounded by his favorite objects floating just out of reach, while his parents insisted he look at shoes -- boring SHOES! -- while every urge in his impulsive body rebelled.
We made it out with a pair of black pirate sneakers, some righteous indignation, and no balloon.
We might not have a diagnosis yet, but there are a few possible ones we've completely discarded, and SPOILED is at the top of the list.
Friday, February 22, 2008
What You Get
I'm a teacher, and I know we teachers are notoriously bad at being on the other side of the desk. We talk through presentations, don't always clean up after ourselves, sometimes we have trouble sharing. But I want to break that mold. I want to learn about and from the rooster, and I want to practice what I preach: work hard, pay attention, and enjoy the process. Blogging might in fact be part of my sharing homework.
L, one of my best friends who teaches at my school tells her students this when they have a tantrum over not getting this or that thing that they wanted: "You get what you get, and you don't get upset." I think she makes them practically sing it - you gotta love that. I've been thinking it applies to having kids. You might have had some image in your mind of the Mini Me you were hoping for, but whatever little swimmer matched up with that month's egg had final say. Boom - you get what you get. No point in having a tantrum about it...
Of course, I wouldn't trade my rooster for anything in the world. And honestly, I never was looking for a Mini Me. I love him for all the ways that he is. I guess the truth is -- and go ahead and hate me, tell me how awful I sound -- I have had moments of wondering if he is the rooster he was always meant to be, or if somehow he got hurt on his journey. Mostly these are thoughts born of my habitual guilt habit, but I'm sure I am not alone. I am sure many a mom has wondered to herself, what if I hadn't eaten that sandwich when I was pregnant? But you know what? I know that my rooster is not "broken." He is complicated. But he is whole. I just have to help him find a place of more peacefulness, more comfort in the world. This could be a lesson we both were meant to learn together.
So, all I'm saying tonight is, after having visited the darker, useless, counterproductive, ugly thoughts, I've decided to take a page from L's plan book, and give myself a little schooling. I'm softly humming the mantra: You get who you get, and you don't get upset.
I love you so big, Rooster, forever.
L, one of my best friends who teaches at my school tells her students this when they have a tantrum over not getting this or that thing that they wanted: "You get what you get, and you don't get upset." I think she makes them practically sing it - you gotta love that. I've been thinking it applies to having kids. You might have had some image in your mind of the Mini Me you were hoping for, but whatever little swimmer matched up with that month's egg had final say. Boom - you get what you get. No point in having a tantrum about it...
Of course, I wouldn't trade my rooster for anything in the world. And honestly, I never was looking for a Mini Me. I love him for all the ways that he is. I guess the truth is -- and go ahead and hate me, tell me how awful I sound -- I have had moments of wondering if he is the rooster he was always meant to be, or if somehow he got hurt on his journey. Mostly these are thoughts born of my habitual guilt habit, but I'm sure I am not alone. I am sure many a mom has wondered to herself, what if I hadn't eaten that sandwich when I was pregnant? But you know what? I know that my rooster is not "broken." He is complicated. But he is whole. I just have to help him find a place of more peacefulness, more comfort in the world. This could be a lesson we both were meant to learn together.
So, all I'm saying tonight is, after having visited the darker, useless, counterproductive, ugly thoughts, I've decided to take a page from L's plan book, and give myself a little schooling. I'm softly humming the mantra: You get who you get, and you don't get upset.
I love you so big, Rooster, forever.
Sleepless
When people ask me why we call our boy "the rooster," I usually give the easy answer: he wakes us up at all hours. They laugh at this, but we don't, as we are too tired. The truth is, in fact, that the name probably evolved in some fatigue-induced haze during which we babbled a string of silly nicknames including Boonie, Roo, Roostie, Roostieroo, and, of course, Rooster. Don't quote me on any of this, as I cannot be held responsible for memory or accuracy - I have not slept in four years.
Again, people laugh when I say I have not slept in four years. These people are off my Christmas/Hanukah list. These people use alarm clocks. Ha! What do these people know.
I'm especially weary of hearing predictions about when we will sleep. These began while I was still pregnant and couldn't get comfortable at night. People warned, "That's mother nature's way of training you, because you aren't going to get a good night's sleep for MONTHS." Then, in the hospital, the rooster kept all the other babies awake, so the nurses asked us to keep him in room, saying we might as well start getting used to it, as it was "only the start." My doctor said three months would be the magic mark. A coworker said a year. Everyone suggested the Ferber method, and we tried, we tried, but alas only we parents cried ourselves to sleep. As all predicted dates for rest came and went, our pediatrician all but promised that the rooster would be sleeping through the night by the time he turned two. And that was a time when he began to sleep through SOME nights. Of course, that is also the year his sister, Peaches, was born.
Soon the rooster will be four and Peaches will turn two. We did discover Melatonin a few weeks ago, no thanks to our pediatrician, so the rooster does GO to sleep now, and that is huge. But what does he expect me to say when he leaps into our room at 3 a.m. and says, "MOMMY?! What are you DOING?" It isn't every night he does this, but, for one reason or another, my sleep gets interrupted about 5 nights a week. Somehow he and Peaches must collude each night. Sometime between dinner and tooth brush time, they must make some plan; with their eyes they must telegraph, "You get mom and dad tonight. Try the coughing thing. That one is good. Tomorrow night I plan to wet the bed, unless you want to lose your pacifier?"
Are my blogs awful? Depressing? The worst? I cannot tell anymore. I'm too tired to read them.
Again, people laugh when I say I have not slept in four years. These people are off my Christmas/Hanukah list. These people use alarm clocks. Ha! What do these people know.
I'm especially weary of hearing predictions about when we will sleep. These began while I was still pregnant and couldn't get comfortable at night. People warned, "That's mother nature's way of training you, because you aren't going to get a good night's sleep for MONTHS." Then, in the hospital, the rooster kept all the other babies awake, so the nurses asked us to keep him in room, saying we might as well start getting used to it, as it was "only the start." My doctor said three months would be the magic mark. A coworker said a year. Everyone suggested the Ferber method, and we tried, we tried, but alas only we parents cried ourselves to sleep. As all predicted dates for rest came and went, our pediatrician all but promised that the rooster would be sleeping through the night by the time he turned two. And that was a time when he began to sleep through SOME nights. Of course, that is also the year his sister, Peaches, was born.
Soon the rooster will be four and Peaches will turn two. We did discover Melatonin a few weeks ago, no thanks to our pediatrician, so the rooster does GO to sleep now, and that is huge. But what does he expect me to say when he leaps into our room at 3 a.m. and says, "MOMMY?! What are you DOING?" It isn't every night he does this, but, for one reason or another, my sleep gets interrupted about 5 nights a week. Somehow he and Peaches must collude each night. Sometime between dinner and tooth brush time, they must make some plan; with their eyes they must telegraph, "You get mom and dad tonight. Try the coughing thing. That one is good. Tomorrow night I plan to wet the bed, unless you want to lose your pacifier?"
Are my blogs awful? Depressing? The worst? I cannot tell anymore. I'm too tired to read them.
Thursday, February 21, 2008
Ages and Stages
These days I'm worrying about getting old. In some ways, I have always been old! But when you look at the generations above you moving up the escalator just ahead of you, you can't help but think about your own journey. And when you have a rooster with special needs one step down, it seems even scarier.
I remember as a child screaming at my mother that one day she would be old and I would NOT take care of her, since she had not taken care of me. Nice, huh? Well, we didn't always scream -- in fact, we could go weeks without speaking to each other much at all. In my teen years, it got worse; she would ask me questions like, "Have you ever tried pot?" and when I said no she said, "You are not my child. Who are you?" I managed our two-person household as best as I could while she hung out with friends, overslept, picked up guys. I seemed to be about a generation older than my mother, and from a different planet. We did not speak the same language, so it was best not to talk to each other too much.
That started changing in my twenties, and really hit a turning point around the time that my mom fell in love with the first good guy in her life, and I fell out of love with the first bad one in mine. My mom started to grow up and settle down as I learned to loosen up and take some risks. She got married, and I got annulled, but we were finally found our mother-daughter voices. I called when I was in pain, and she answered. I leaned, and she supported. Better late than never, my mom showed up to save the day.
Now that I am 36 and she is 63, a shift: we both call with our joys and our burdens, which are similar in some ways now. We're both married to the right guys, we're both working hard, we're both tired. We talk a little more like peers. I find myself wondering how long this part will last, until we come back around full circle and once again I need to take care of my mother, as she is caring for hers.
My grandma has always been my hero. She was the one I talked to when I was growing up, who understood my love of school, who celebrated my report cards, who proclaimed, "I'm so proud of you, I could bust!" She was a teacher, and she has always been proud that I became a teacher. (My mom, upon hearing I'd decided to teach, asked for the umpteenth time, "Who are you? You are not my child!") There were times I felt like my grandparents and I shared the job of raising my mother. In my most bitter moments, I felt that somehow some crazy, unjust generational goof had happened, and I should have been their daughter instead, and then I would have had the happy childhood that my mother ironically despised and rebelled against.
My grandma stayed young well into her old age. When I left town to start my own life and my own family, she and my grandpa let me off the hook without a word of guilt or reproach, taking over the last remnants of supporting my mother, who has grown up considerably, but will never be June Cleaver or anything. It was only once my grandpa began to unravel, maybe just five years ago or so, that my grandma also found herself really aging quickly at long last, and my mother found herself having to face serious role reversal.
"She just won't LISTEN," my mom will lament. "I cannot get her to take her medicine, or get some exercise, or get a shower when she needs to. I just get so frustrated." I know exactly how she feels, and so I try to commiserate. I can't get the rooster to do any of those things, either. I tell her that he's oppositional, loud, aggressive, messy, stubborn, and exhausting. She says, "That's my grandson you're talking about! He's funny! He cracks me up! He's got personality! You can't get so upset. He's only three." I say, "Grandma is in her eighties. You've got to cut her some slack. When you're old, it's your right to be ornery. Besides, she can't help it. And you'll be there some day, and it will be my turn to be patient."
And after that, if I'm lucky, I will be the old one. And who will my rooster be then? It' an unanswerable question, like so many I have for the crystal ball when I think of the rooster.
I look at my grandma, young for so long, now for the first time ever too old to turn to with my own problems, and I feel sad and wish that I could help her more, as she always helped me. I look at my mom, helping my grandma, and I see how it ages her as well to take on this care taking role. I look at my son and wonder: when I am at the top of the escalator, will he be taking care of me, or will I be worrying who will be left to take care of him?
I remember as a child screaming at my mother that one day she would be old and I would NOT take care of her, since she had not taken care of me. Nice, huh? Well, we didn't always scream -- in fact, we could go weeks without speaking to each other much at all. In my teen years, it got worse; she would ask me questions like, "Have you ever tried pot?" and when I said no she said, "You are not my child. Who are you?" I managed our two-person household as best as I could while she hung out with friends, overslept, picked up guys. I seemed to be about a generation older than my mother, and from a different planet. We did not speak the same language, so it was best not to talk to each other too much.
That started changing in my twenties, and really hit a turning point around the time that my mom fell in love with the first good guy in her life, and I fell out of love with the first bad one in mine. My mom started to grow up and settle down as I learned to loosen up and take some risks. She got married, and I got annulled, but we were finally found our mother-daughter voices. I called when I was in pain, and she answered. I leaned, and she supported. Better late than never, my mom showed up to save the day.
Now that I am 36 and she is 63, a shift: we both call with our joys and our burdens, which are similar in some ways now. We're both married to the right guys, we're both working hard, we're both tired. We talk a little more like peers. I find myself wondering how long this part will last, until we come back around full circle and once again I need to take care of my mother, as she is caring for hers.
My grandma has always been my hero. She was the one I talked to when I was growing up, who understood my love of school, who celebrated my report cards, who proclaimed, "I'm so proud of you, I could bust!" She was a teacher, and she has always been proud that I became a teacher. (My mom, upon hearing I'd decided to teach, asked for the umpteenth time, "Who are you? You are not my child!") There were times I felt like my grandparents and I shared the job of raising my mother. In my most bitter moments, I felt that somehow some crazy, unjust generational goof had happened, and I should have been their daughter instead, and then I would have had the happy childhood that my mother ironically despised and rebelled against.
My grandma stayed young well into her old age. When I left town to start my own life and my own family, she and my grandpa let me off the hook without a word of guilt or reproach, taking over the last remnants of supporting my mother, who has grown up considerably, but will never be June Cleaver or anything. It was only once my grandpa began to unravel, maybe just five years ago or so, that my grandma also found herself really aging quickly at long last, and my mother found herself having to face serious role reversal.
"She just won't LISTEN," my mom will lament. "I cannot get her to take her medicine, or get some exercise, or get a shower when she needs to. I just get so frustrated." I know exactly how she feels, and so I try to commiserate. I can't get the rooster to do any of those things, either. I tell her that he's oppositional, loud, aggressive, messy, stubborn, and exhausting. She says, "That's my grandson you're talking about! He's funny! He cracks me up! He's got personality! You can't get so upset. He's only three." I say, "Grandma is in her eighties. You've got to cut her some slack. When you're old, it's your right to be ornery. Besides, she can't help it. And you'll be there some day, and it will be my turn to be patient."
And after that, if I'm lucky, I will be the old one. And who will my rooster be then? It' an unanswerable question, like so many I have for the crystal ball when I think of the rooster.
I look at my grandma, young for so long, now for the first time ever too old to turn to with my own problems, and I feel sad and wish that I could help her more, as she always helped me. I look at my mom, helping my grandma, and I see how it ages her as well to take on this care taking role. I look at my son and wonder: when I am at the top of the escalator, will he be taking care of me, or will I be worrying who will be left to take care of him?
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.
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