So, all I have to say for myself is that IEP season kicked my ass but good.
I’m still sorting it out, and there will be details. And I know that blogging will probably make me feel good after I do it, kind of like exercise, but I haven’t been able to bring myself to sit down and do it. (Blog. Or exercise, either.)
I don’t want this blog to be All Autism, All the Time, but that’s kind of how things have felt around here lately, so instead I’m silent.
And yet—there’s been so much good stuff, too. The extra time I’ve been able to spend with my boys since our nanny quit. The fact that my mom is here to lend a hand, and she makes the best piña coladas on this planet. The unbelievable progress Secondo has made lately. Firing up the grill on cool evenings for no real reason and enjoying time on the patio with a nice glass of white wine. Work, even, because it’s always interesting.
I might have to ease back into things with some fluff. Jump-start the blog and see what happens.
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Tuesday, June 2, 2009
Wednesday, March 11, 2009
Support
I occasionally attend a support group for parents of children with special needs. I was excited to find out about it, and even though it’s held on weekday mornings, my schedule sometimes allows it. I’ve met some very nice people, including the coordinator, a gentle soul I was drawn to the minute I met her, a woman who gives out her cell phone number so you can call her in the middle of the night about an IEP if you need to. They are a wealth of information and experience. Their kids are all older than mine. Many of their children have multiple disabilities and are autistic on top of that, a fact that humbles me. They treat me, the newcomer, with kid gloves. Your son was just diagnosed, they tell me. You’ll never be as vulnerable as you are right now. It will never be this hard again. It will still be hard, but it will be different.
And every time I go, I question whether or not I should go back.
The group is different every time, so we start with introductions. My son, Secondo, is three, I tell the group at the most recent meeting. He’s autistic, and he’s in the special-ed preschool class. His teacher is wonderful, and he’s made a lot of progress. She just told us we need to rewrite his IEP, because he’s mastered most of the goals in his current IEP.
I tell the group this, and it’s not like I’m expecting a fucking cookie, as my roommate used to say. But I am definitely not expecting the response I get, which is this:
Laughter. Followed by: “Well, enjoy it now, because that’s never going to happen again.” A couple of snorts. Taken aback, I look at the coordinator, who says, “You do know that this won’t happen again.” I don’t know if it’s a statement or a question. Her tone is gentle, her expression is compassionate, but she is speaking as if she needs to disabuse me, the Pollyanna in their midst, of the notion that my son’s progress in preschool means that life will be nothing but rainbows and fairy dust from now on.
“Oh, sure,” I laugh, because now I am on the spot, and I have to laugh it off. But I am hurt, really hurt. We move on to the next introduction.
The thing is, I know. No one has to tell me. I know things get hard, really hard. I know that parents hire advocates because they feel the system is failing their children and have knock-down, drag-out fights at IEP meetings. I think about junior high and about kids being cruel to my boy, and it terrifies me. I know Secondo will be autistic for the rest of his life, and I don't know what his future holds. I know that Secondo’s special-ed preschool class is a special little bubble, one in which in many ways, I don’t have to face reality. In this bubble I can concentrate on the good, and only on the good, if I so desire. I know. I know one of the reasons he’s mastered his goals is because they were so basic to begin with, and that things will become much more challenging. But I’d rather just be happy that he’s mastered these goals. Because if I really think hard about the fact that one of the original goals was to get him to respond to his name, it makes me want to cry.
But you know what? No matter how basic those goals were, I normally do find it easy to feel optimistic about things. Because the fact of the matter is, Secondo wasn’t responding to his name a few months ago. (Before he was evaluated, but after we’d shared our concerns with P’s parents, they came to visit and my father-in-law spent a great deal the visit yelling, “Secondo!!” and clapping his hands in Secondo’s face to get him to respond. I can’t even describe how stressed out I was, or the despair I felt right then.)
But he’s come a long, long way since then, and I’m prouder of him than I can say.
So, let me try my introduction again, here, on my blog. My son is three, his name is Secondo, and he’s autistic. He’s in a special-ed preschool class, and he’s doing great. His teacher suggested we rewrite his IEP soon, because he’s mastered most of his goals. They were basic goals, but they were things I couldn’t even imagine him doing only a few months ago.
Isn’t that awesome?
[And hey, if you want to leave a comment, at least you know what not to say.]
And every time I go, I question whether or not I should go back.
The group is different every time, so we start with introductions. My son, Secondo, is three, I tell the group at the most recent meeting. He’s autistic, and he’s in the special-ed preschool class. His teacher is wonderful, and he’s made a lot of progress. She just told us we need to rewrite his IEP, because he’s mastered most of the goals in his current IEP.
I tell the group this, and it’s not like I’m expecting a fucking cookie, as my roommate used to say. But I am definitely not expecting the response I get, which is this:
Laughter. Followed by: “Well, enjoy it now, because that’s never going to happen again.” A couple of snorts. Taken aback, I look at the coordinator, who says, “You do know that this won’t happen again.” I don’t know if it’s a statement or a question. Her tone is gentle, her expression is compassionate, but she is speaking as if she needs to disabuse me, the Pollyanna in their midst, of the notion that my son’s progress in preschool means that life will be nothing but rainbows and fairy dust from now on.
“Oh, sure,” I laugh, because now I am on the spot, and I have to laugh it off. But I am hurt, really hurt. We move on to the next introduction.
The thing is, I know. No one has to tell me. I know things get hard, really hard. I know that parents hire advocates because they feel the system is failing their children and have knock-down, drag-out fights at IEP meetings. I think about junior high and about kids being cruel to my boy, and it terrifies me. I know Secondo will be autistic for the rest of his life, and I don't know what his future holds. I know that Secondo’s special-ed preschool class is a special little bubble, one in which in many ways, I don’t have to face reality. In this bubble I can concentrate on the good, and only on the good, if I so desire. I know. I know one of the reasons he’s mastered his goals is because they were so basic to begin with, and that things will become much more challenging. But I’d rather just be happy that he’s mastered these goals. Because if I really think hard about the fact that one of the original goals was to get him to respond to his name, it makes me want to cry.
But you know what? No matter how basic those goals were, I normally do find it easy to feel optimistic about things. Because the fact of the matter is, Secondo wasn’t responding to his name a few months ago. (Before he was evaluated, but after we’d shared our concerns with P’s parents, they came to visit and my father-in-law spent a great deal the visit yelling, “Secondo!!” and clapping his hands in Secondo’s face to get him to respond. I can’t even describe how stressed out I was, or the despair I felt right then.)
But he’s come a long, long way since then, and I’m prouder of him than I can say.
So, let me try my introduction again, here, on my blog. My son is three, his name is Secondo, and he’s autistic. He’s in a special-ed preschool class, and he’s doing great. His teacher suggested we rewrite his IEP soon, because he’s mastered most of his goals. They were basic goals, but they were things I couldn’t even imagine him doing only a few months ago.
Isn’t that awesome?
[And hey, if you want to leave a comment, at least you know what not to say.]
Friday, December 19, 2008
Spaghetti
I know that we’re supposed to pick our battles with our children. That when we do, we’re supposed to win every time. That some things are best not turned into battles in the first place. And I try to remember that, but some things just drive me batshit crazy.
With Secondo, one of them is eating with utensils. Or not eating with utensils. It drives me crazy that he often flat-out refuses to. That he will grab a handfuls of oatmeal and gleefully squish gobs of it between his fingers with obvious enjoyment and then wipe his hands on his shirt. That I’ve occasionally caught his overly-motherly Salvadoran nanny feeding him in order to prevent messes from happening, even though I’ve asked her not to. That my friend with the toddler who eats soup without spilling a drop makes comments about children needing to learn table manners and then glances pointedly at my kids. I tell myself not to get so frustrated about the whole thing, which is getting harder the older they get, because there are some things they should just be able to do by now, dammit, and it all ties in to my expectations for Secondo and my constant worry about what behavior is just your average three-year-old behavior and what isn’t. Because some of it isn’t. The autism, it always lurks, and it can mess with my mind.
I sit with Secondo and snatch his bowl of food away as he lunges at it with his hands. Con la cuchara, I remind him. Con la cuchara, he repeats, and takes a spoonful. Then he lunges with his hands again, and he’s really, really fast.
Tonight I take a different tack, something I’ve tried before, so it’s not exactly new. I will be positive, I will not let my frustration show. The boys are eating spaghetti, and Secondo takes a bite with the fork. ¡Excelente! I yell, and he looks at me and giggles. I’ve never been quite this enthusiastic, and I've obviously hit upon the right word. ¡Excelente! he repeats. Then takes another bite. ¡Excelente! I squeal, and this time I clap my hands and praise him profusely. Now Primo is laughing and wants in on it, too, so when he takes a bite: ¡Excelente!
And we are all having so much fun and laughing so hard that I don’t notice when Secondo grabs a handful of spaghetti, like a flash. I grab the bowl. It goes flying. There is spaghetti everywhere. I put my head in my hands and take a deep breath. Several seconds go by.
No tan excelente, Primo observes, finally, breaking the silence. His tone is sober.
Not so excellent, indeed. But at least now I am laughing as I clean up the spaghetti.
With Secondo, one of them is eating with utensils. Or not eating with utensils. It drives me crazy that he often flat-out refuses to. That he will grab a handfuls of oatmeal and gleefully squish gobs of it between his fingers with obvious enjoyment and then wipe his hands on his shirt. That I’ve occasionally caught his overly-motherly Salvadoran nanny feeding him in order to prevent messes from happening, even though I’ve asked her not to. That my friend with the toddler who eats soup without spilling a drop makes comments about children needing to learn table manners and then glances pointedly at my kids. I tell myself not to get so frustrated about the whole thing, which is getting harder the older they get, because there are some things they should just be able to do by now, dammit, and it all ties in to my expectations for Secondo and my constant worry about what behavior is just your average three-year-old behavior and what isn’t. Because some of it isn’t. The autism, it always lurks, and it can mess with my mind.
I sit with Secondo and snatch his bowl of food away as he lunges at it with his hands. Con la cuchara, I remind him. Con la cuchara, he repeats, and takes a spoonful. Then he lunges with his hands again, and he’s really, really fast.
Tonight I take a different tack, something I’ve tried before, so it’s not exactly new. I will be positive, I will not let my frustration show. The boys are eating spaghetti, and Secondo takes a bite with the fork. ¡Excelente! I yell, and he looks at me and giggles. I’ve never been quite this enthusiastic, and I've obviously hit upon the right word. ¡Excelente! he repeats. Then takes another bite. ¡Excelente! I squeal, and this time I clap my hands and praise him profusely. Now Primo is laughing and wants in on it, too, so when he takes a bite: ¡Excelente!
And we are all having so much fun and laughing so hard that I don’t notice when Secondo grabs a handful of spaghetti, like a flash. I grab the bowl. It goes flying. There is spaghetti everywhere. I put my head in my hands and take a deep breath. Several seconds go by.
No tan excelente, Primo observes, finally, breaking the silence. His tone is sober.
Not so excellent, indeed. But at least now I am laughing as I clean up the spaghetti.
Tuesday, December 9, 2008
Look! A Picture!
Kind of. Don't ask me why I'm so unwilling to post pictures of my boys on my blog but then submit them to other blogs. But I submitted a picture of Secondo to Faces of Autism. Here's the link, if anyone wants to take a peek.
I wrote in my blogroll post that I look at those pictures and see nothing but joy, but that's not entirely true. I look beyond the smiling faces and see families who have struggled, just as we are struggling. I see a tremendous amount of love.
But mostly, I do see the joy, and that's why I love that blog. Because I think that most people don't think the words "autism" and "joy" go together. But they do. Go see.
I wrote in my blogroll post that I look at those pictures and see nothing but joy, but that's not entirely true. I look beyond the smiling faces and see families who have struggled, just as we are struggling. I see a tremendous amount of love.
But mostly, I do see the joy, and that's why I love that blog. Because I think that most people don't think the words "autism" and "joy" go together. But they do. Go see.
Sunday, October 12, 2008
Diagnosis, Part I
We sit in the waiting room in the Psychiatry Department, and we wait. Considering that it took us so many months to get this appointment, the waiting room here is not as nice as I thought it would be. It’s actually kind of sad. There is a worn train table, but there are no toy trains or cars to be seen. There is a chipped plastic musical toy that even Secondo, who adores anything with buttons that plays music, only tries out once before he loses interest. I have his favorite book, one about a school bus, in my purse, and I hold him on my lap and read it to him over, and over, and over again. He wanders over to the double doors occasionally, and I follow to make sure no one opens them and knocks him over.
We wait, and we wait. I am sick of the book about the school bus. After about an hour I hear the receptionist whispering animatedly on the phone. Tell her she’s got a patient waiting, she hisses loudly enough for me to hear, then hangs up and tells me the doctor is on her way down.
I can tell you all are really busy, I say, trying to sound sympathetic.
This place is CRAZY, she says, shaking her head, and I nearly start to laugh, considering where we are and all, but she doesn’t seem to realize what she’s said.
Dr. A rushes in, finally, and greets us warmly. She had an emergency upstairs. She disappears in the back for another twenty minutes. I assume she’s reading Secondo’s chart, or at least I hope she is, because filling out all the paperwork was draining and took P and me hours.
She walks back out, this time with an entourage of about four other doctors, interns, who knows. I don’t remember. They all stand in a row holding their clipboards and though she introduces them all, I am disconcerted by their presence and their names don't even register.
We go to the playroom. The carpet is dark and the room is small and bare, except for a table and chairs and one large window, which I later realize is a two-way mirror. Dr. A and another doctor (the others have disappeared behind the mirror, I assume) break out a bin of toys and watch Secondo play even as they’re grilling us. They ask P and me probing questions that throw me for a loop, questions about breastfeeding and baby blues, our marriage, high school. Secondo wanders around, not so much into any of the toys with the exception of a hot pink Barbie convertible. At one point he gets up and starts licking the armrests of every chair in the room. I am so taken aback that I can’t even speak, because I’ve never seen him do this, ever, and it makes me feel deeply uneasy. Absurdly, a clip from the movie Airplane! starts playing in my head: Jim never has a second cup of coffee at home. Secondo never does this at home. But I don’t say that, because he's doing it now. Instead I distract him and he moves on to something else.
Dr. A is full of positive comments. It’s always hard to diagnose children who’ve received good parenting. You have a gentle touch with him. I think your instincts are good. She needs to see Secondo a few more times, she says. She and the second doctor talk for a minute about repetitive behaviors they've noticed. It’s just such a relief, I tell her. It's such a relief to have someone NOT dismiss my concerns. And all of a sudden I am crying so hard I can’t speak. Someone passes me a box of tissues that is on the table. I hadn’t noticed it when we came in. Of course they keep them right there, I think. Duh. And as I try to regain my composure I am reminded of all of the witnesses I’ve ever interpreted for who have cried on the stand as I’ve stood next to them, waiting, sympathetic but detached and professional. There’s always a box of tissues right there, but they never notice it until someone nudges it in their direction.
I know this is hard, Dr. A says gently, and that’s when I stop crying. No, I tell her, wiping my eyes. This isn’t hard. The hard part was taking him in for that very first appointment.
This is what I’ve told people for many months now, and I’ve firmly believed it. And yet, today, even as I’m saying it, I realize it’s not true, at least not this time.
Because it is hard. Even when you see it coming, it’s hard.
We wait, and we wait. I am sick of the book about the school bus. After about an hour I hear the receptionist whispering animatedly on the phone. Tell her she’s got a patient waiting, she hisses loudly enough for me to hear, then hangs up and tells me the doctor is on her way down.
I can tell you all are really busy, I say, trying to sound sympathetic.
This place is CRAZY, she says, shaking her head, and I nearly start to laugh, considering where we are and all, but she doesn’t seem to realize what she’s said.
Dr. A rushes in, finally, and greets us warmly. She had an emergency upstairs. She disappears in the back for another twenty minutes. I assume she’s reading Secondo’s chart, or at least I hope she is, because filling out all the paperwork was draining and took P and me hours.
She walks back out, this time with an entourage of about four other doctors, interns, who knows. I don’t remember. They all stand in a row holding their clipboards and though she introduces them all, I am disconcerted by their presence and their names don't even register.
We go to the playroom. The carpet is dark and the room is small and bare, except for a table and chairs and one large window, which I later realize is a two-way mirror. Dr. A and another doctor (the others have disappeared behind the mirror, I assume) break out a bin of toys and watch Secondo play even as they’re grilling us. They ask P and me probing questions that throw me for a loop, questions about breastfeeding and baby blues, our marriage, high school. Secondo wanders around, not so much into any of the toys with the exception of a hot pink Barbie convertible. At one point he gets up and starts licking the armrests of every chair in the room. I am so taken aback that I can’t even speak, because I’ve never seen him do this, ever, and it makes me feel deeply uneasy. Absurdly, a clip from the movie Airplane! starts playing in my head: Jim never has a second cup of coffee at home. Secondo never does this at home. But I don’t say that, because he's doing it now. Instead I distract him and he moves on to something else.
Dr. A is full of positive comments. It’s always hard to diagnose children who’ve received good parenting. You have a gentle touch with him. I think your instincts are good. She needs to see Secondo a few more times, she says. She and the second doctor talk for a minute about repetitive behaviors they've noticed. It’s just such a relief, I tell her. It's such a relief to have someone NOT dismiss my concerns. And all of a sudden I am crying so hard I can’t speak. Someone passes me a box of tissues that is on the table. I hadn’t noticed it when we came in. Of course they keep them right there, I think. Duh. And as I try to regain my composure I am reminded of all of the witnesses I’ve ever interpreted for who have cried on the stand as I’ve stood next to them, waiting, sympathetic but detached and professional. There’s always a box of tissues right there, but they never notice it until someone nudges it in their direction.
I know this is hard, Dr. A says gently, and that’s when I stop crying. No, I tell her, wiping my eyes. This isn’t hard. The hard part was taking him in for that very first appointment.
This is what I’ve told people for many months now, and I’ve firmly believed it. And yet, today, even as I’m saying it, I realize it’s not true, at least not this time.
Because it is hard. Even when you see it coming, it’s hard.
Friday, September 26, 2008
A Note to Ms. C
9/26
Ms. C,
An update on Secondo’s appointment—we met with Dr. [Big Fancy Psychiatrist] at [Big Fancy Hospital] today. No official diagnosis, because she wants to see him a few more times in the upcoming weeks, but in her words, he’s most likely on the autism spectrum.
I know Secondo isn’t so big on the fruit I send to school with him, but I keep trying anyway!
K.
Ms. C,
An update on Secondo’s appointment—we met with Dr. [Big Fancy Psychiatrist] at [Big Fancy Hospital] today. No official diagnosis, because she wants to see him a few more times in the upcoming weeks, but in her words, he’s most likely on the autism spectrum.
I know Secondo isn’t so big on the fruit I send to school with him, but I keep trying anyway!
K.
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