My Facebook feed is filled with photos of children heading back to school, their eyes brightly filled with nervous anticipation. Next week, I'll post some back to school photos too. Jelly will be starting first grade. I can hardly believe it.
But Moe, once again, will not be starting school. Not traditional school anyway, the kind with backpacks and lunch boxes and newly decorated classrooms. Moe will, for now, continue to be homeschooled. And even if it is the right thing for him, it hurts.
While most parents of special needs kids learn to ignore milestones, to accept their children exactly as they are and celebrate progress whenever and however it comes, there are still those things that are bigger reminders. As if we could forget.
It might be the holidays, surrounded by family or friends whose kids are striding forward just as everyone expected them to. Maybe it's birthdays that unglue you, forced to face a new number, another year of nowhere near where you thought they'd be. Maybe it's summer break, watching kids go off to camp and family holidays, knowing you're unlikely to ever take a real family vacation again.
It's all hard, but for me, back to school time is especially rough. Facebook is filled all at once with photos of every kid I met in the early days of motherhood, through babyhood and first steps and mommy and me classes. How big they are! How far they've come! Third grade already. Happy to get the teacher they wanted. Happy to see friends. Happy.
And we, once again, are faced with choices, risk in all of them. Send him back to a public school that isn't able to serve him well? Fight for placement, knowing that it would be better than what the public school would offer but unsure if it would be better than what we're doing at home? We're doing the work to figure that out, and we will. But it isn't the problem I want to be solving.
I want to be helping Moe with friends and homework and auditioning for the school play. I feel bad that I can't give him those things. I feel bad that I can't take away his frustration and anger and anxiety. And mostly that I brought him into a world that is not set up for him, and for not knowing how to help him get set up for the world as it is.
Showing posts with label school. Show all posts
Showing posts with label school. Show all posts
August 18, 2015
March 16, 2014
I Think Applying to College Was Easier
It's exhausting. I've been staying out of the fray for the last few months. I don't have the time to keep up with my friends so I certainly don't have time for any of that bullshit. I've stopped reading several pages that repeatedly make my blood boil and my head hurt, and I'm better for it. I highly recommend the therapeutic effect of the unlike button.
It's not that I don't care about these issues. They affect me, my friends, and my community. They affect you too. I have many half-written posts on the blog and in my head on several important issues. But at the end of a busy work day, I really just want a glass of wine and an episode of House of Cards.
The time change isn't helping either.
But I have a few moments right now, sitting with Jelly while she takes a bath. So I will tell you about a situation that I know I am fortunate to have, but that is adding another level of uncertainty to our lives these days. Remember when I wrote about our school choices for Jelly? (If not, you can catch up here.) The private school we were hoping for just sent out their decisions, and she was—wait for it—wait listed. Which makes me laugh because it's f-ing kindergarten and because what the hell are we supposed to do now?
Jelly was accepted to another private school, one that would be very good academically but I have a couple reservations about. It is our best current option, but if we take that spot we risk losing a hefty deposit if she later gets accepted to school #1. If we don't take that spot, we risk not having a spot at all, which means one of the public school options, with the only guaranteed school being the one we are least excited about.So I am once again left wondering why nothing can ever just be simple.
We told Jelly today the she probably wouldn't be going to school #1, and she was disappointed. She mostly liked the playground, and the art room with a how to draw princesses book. Playgrounds are everywhere, but that school does have a pretty fantastic art studio. Maybe next year.
September 21, 2012
Explanatory Fictions, Behavior, and Sensory Processing
Many people with autism are also diagnosed with Sensory Process Disorder (SPD). Much like autism itself, diagnosis is not always clear-cut. We all, to some degree, have some sensory sensitivities or proclivities. But true SPD is more than that. We know from people who are capable of describing such things, that some people do process sensory "input," like lights, sounds, and touch, as well as movement and awareness of body in space, differently than people without SPD.
I don't know if Moe has SPD. I'm sure if you asked our Occupational Therapist, she would say unequivocally yes. If you ask our ABA Director, he might deny such a thing exists. And herein lies the challenge.
Moe is a sensory seeker. He loves to play with water and have his back rubbed and feet squeezed. He is calmed by swinging and gets riled up by spinning. He will occasionally do things like pull the grass and watch it fall very closely to his eyes. Everything goes in his mouth. He likes stronger flavors than most kids his age (spicy or sour) and seems to have a fairly high pain tolerance. As I write this, he is screaming, not out of any or frustration, but because it is a new "stim," or so it seems from the outside.
But how do we know he has a processing disorder? We do know he has severe language impairments. Without language to process the world, what is left but the senses? Moe can touch and taste and explore with his body. It is what he understands. He cannot connect to others with conversation, but when someone rubs his feet, that feels good and he likes to keep that going. That seems perfectly reasonable to me, not like a disorder at all, in fact.
Moe does have some sensory sensitivities, especially to the dog barking and to the sound of his little sister crying. His sensitivities are not extreme in that he can recover from them fairly quickly when the noise stops, but he is clearly bothered by those sounds quite a bit. I am too. Those two in particular make it very hard for me to concentrate. If the dog is barking, I find I absolutely cannot continue a conversation I'm having. I don't go running from the room, but I am also older and able to regulate my reactions better. Now I don't know if Moe and I fundamentally process sounds differently, but it is hard to diagnose a disorder based on hating two of the most annoying sounds known to man.
I mentioned the word "regulation." This is something Moe has quite a bit of trouble with. He can get very excited very quickly, and sensory input is often helpful in calming him down. A lot of what we do in OT is related to these regulation and calming strategies. Moe can also be quite impulsive. But again, without language or the sense that there socially acceptable ways to behave and not behave, and no way to ask for things beyond the few gestures and sounds he has, the line between sensory processing and behavior becomes blurred.
And this brings me to something I've come to learn about Moe, and about why so many of the techniques we've tried in the past with him may not have been successful. It is very easy to attribute Moe's behaviors, like grabbing, pulling, and biting, to "sensory needs." In his classroom, they would give him things like weighted vests, fidget toys, and chewies when he was acting out, especially during activities like circle time. And sometimes those things helped and sometimes they didn't. And when Moe used a "replacement behavior" like chewing on a pillow instead of a person, they claimed success and moved on. But they weren't addressing the fundamental issue.
How do I know that? Because it didn't stop the behaviors. In fact, it may have increased them. Imagine if you were trying to tell someone that you didn't like circle time, or didn't understand what was expected of you, and they stuck a heavy blanket on you. You might, for a moment, think, "this blanket is really comfortable." But then you'd realize that you are still in circle time and you still don't understand what you are supposed to be doing. And then you would be even more frustrated.
Sometimes, it seems Moe is unable to control his actions. He lashes out or spins wildly in his hammock swing or screeches, and I think he can't help himself. But by working this summer with some talented behaviorists, I've learned that he can. For example, Moe will often get aggressive when getting ready for bed. I could believe that when he is over-tired, he cannot regulate his system, and the deep pressure input he gets when he grabs me is his way to try to calm down. Or I could believe that he doesn't want to go to bed, and is acting out because that is his only way to communicate a pretty complex need. Or maybe the truth is somewhere in the middle. He's overtired, feeling cranky, and is hitting because he wants me to know that he doesn't like how he's feeling.
What I do know is that with the right motivation, Moe is able to control his response. If, for example, I let him have his iPod while I'm changing his diaper, he is calm. It is not just that the iPod gives him a place to focus. He will be acting out, and I can say "do you want phone? Show me nice hands." He will immediately calm. I can then say "please lay down." He will lay down immediately. I hand him the phone and we get through the diaper change quickly and easily.
I am not denying that Moe has trouble regulating his emotional response. I don't deny that he is a sensory seeker or that sometimes he gets so frustrated or overstimulated that a sensory approach is the right way to help him calm down. But we, as well as many who have worked with Moe in the past, have probably downplayed or misunderstood the behavioral component to his actions. We used what our ABA director called "explanatory fictions," applying a sensory approach to a behavioral situation, and as Moe gets older and his needs are becoming more complex, as he is asked to do more and has more reason to try to get out of completing taks, we are figuring out better ways to both motivate appropriate behaviors and attempt to extinguish inappropriate (aggressive) ones.
I don't know if Moe has SPD. I'm sure if you asked our Occupational Therapist, she would say unequivocally yes. If you ask our ABA Director, he might deny such a thing exists. And herein lies the challenge.
Moe is a sensory seeker. He loves to play with water and have his back rubbed and feet squeezed. He is calmed by swinging and gets riled up by spinning. He will occasionally do things like pull the grass and watch it fall very closely to his eyes. Everything goes in his mouth. He likes stronger flavors than most kids his age (spicy or sour) and seems to have a fairly high pain tolerance. As I write this, he is screaming, not out of any or frustration, but because it is a new "stim," or so it seems from the outside.
But how do we know he has a processing disorder? We do know he has severe language impairments. Without language to process the world, what is left but the senses? Moe can touch and taste and explore with his body. It is what he understands. He cannot connect to others with conversation, but when someone rubs his feet, that feels good and he likes to keep that going. That seems perfectly reasonable to me, not like a disorder at all, in fact.
Moe does have some sensory sensitivities, especially to the dog barking and to the sound of his little sister crying. His sensitivities are not extreme in that he can recover from them fairly quickly when the noise stops, but he is clearly bothered by those sounds quite a bit. I am too. Those two in particular make it very hard for me to concentrate. If the dog is barking, I find I absolutely cannot continue a conversation I'm having. I don't go running from the room, but I am also older and able to regulate my reactions better. Now I don't know if Moe and I fundamentally process sounds differently, but it is hard to diagnose a disorder based on hating two of the most annoying sounds known to man.
I mentioned the word "regulation." This is something Moe has quite a bit of trouble with. He can get very excited very quickly, and sensory input is often helpful in calming him down. A lot of what we do in OT is related to these regulation and calming strategies. Moe can also be quite impulsive. But again, without language or the sense that there socially acceptable ways to behave and not behave, and no way to ask for things beyond the few gestures and sounds he has, the line between sensory processing and behavior becomes blurred.
And this brings me to something I've come to learn about Moe, and about why so many of the techniques we've tried in the past with him may not have been successful. It is very easy to attribute Moe's behaviors, like grabbing, pulling, and biting, to "sensory needs." In his classroom, they would give him things like weighted vests, fidget toys, and chewies when he was acting out, especially during activities like circle time. And sometimes those things helped and sometimes they didn't. And when Moe used a "replacement behavior" like chewing on a pillow instead of a person, they claimed success and moved on. But they weren't addressing the fundamental issue.
How do I know that? Because it didn't stop the behaviors. In fact, it may have increased them. Imagine if you were trying to tell someone that you didn't like circle time, or didn't understand what was expected of you, and they stuck a heavy blanket on you. You might, for a moment, think, "this blanket is really comfortable." But then you'd realize that you are still in circle time and you still don't understand what you are supposed to be doing. And then you would be even more frustrated.
Sometimes, it seems Moe is unable to control his actions. He lashes out or spins wildly in his hammock swing or screeches, and I think he can't help himself. But by working this summer with some talented behaviorists, I've learned that he can. For example, Moe will often get aggressive when getting ready for bed. I could believe that when he is over-tired, he cannot regulate his system, and the deep pressure input he gets when he grabs me is his way to try to calm down. Or I could believe that he doesn't want to go to bed, and is acting out because that is his only way to communicate a pretty complex need. Or maybe the truth is somewhere in the middle. He's overtired, feeling cranky, and is hitting because he wants me to know that he doesn't like how he's feeling.
What I do know is that with the right motivation, Moe is able to control his response. If, for example, I let him have his iPod while I'm changing his diaper, he is calm. It is not just that the iPod gives him a place to focus. He will be acting out, and I can say "do you want phone? Show me nice hands." He will immediately calm. I can then say "please lay down." He will lay down immediately. I hand him the phone and we get through the diaper change quickly and easily.
I am not denying that Moe has trouble regulating his emotional response. I don't deny that he is a sensory seeker or that sometimes he gets so frustrated or overstimulated that a sensory approach is the right way to help him calm down. But we, as well as many who have worked with Moe in the past, have probably downplayed or misunderstood the behavioral component to his actions. We used what our ABA director called "explanatory fictions," applying a sensory approach to a behavioral situation, and as Moe gets older and his needs are becoming more complex, as he is asked to do more and has more reason to try to get out of completing taks, we are figuring out better ways to both motivate appropriate behaviors and attempt to extinguish inappropriate (aggressive) ones.
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September 17, 2012
And Back Again
When Moe was two, he had 25 hours a week of in-home early intervention. At the end of that difficult year, I said I would never do that again.
This summer, we had Moe in a 30 hour a week in-home ABA program. I agreed because it seemed like a way to jump start his learning after two years of being enrolled in a preschool program with very little progress. And it was only ten weeks. At the end, I said I would never do that again.
And now, just three weeks later, I am doing it again.
It has been a hard three weeks that has affected all of us. Moe had a rough transition back to school. Behaviors that I had hoped would taper off after returning to a regular schedule escalated. We drove 50 miles a day to school and back, and each day on pickup, the report was the same: "Moe had a rough day." We added a dedicated aide. We adjusted Moe's daily schedule. We hoped it was just a transition period.
And this weekend, we made a decision. We took Moe out of school.
Of course, we consulted with a few people first. Jeff and I observed the class. And we could see that despite some really positive aspects, it was not going to suit his needs. They weren't set up for him. He was unhappy, in Moe's perfect storm of both bored and over-stimulated. And Jeff and I, through our research on schools last year, through the ups and downs and assessments and evaluations and so very many therapies (and therapists) have gotten good at knowing what is working for Moe and what isn't. Moe may simply not be ready for a classroom environment.
Moe had a good summer with his in-home ABA program. So for now, we are going to continue with this. As the end of summer approached, we considered whether we wanted to continue on or send Moe back to school. We thought the program would be a good complement to an afternoon ABA program. And even though Moe wasn't able to weigh in on the decision beforehand, his behavior told us he wasn't happy there. And we decided to listen to him.
I am nervous. It means I am, for the third time, going to be with Moe almost all of the time. He can be challenging, and I get the brunt of his frustration and aggression. Part of me thinks that if he is not ready for a classroom environment, isn't that exactly where he needs to be? How else will he get ready? But he really learns better at home in that one on one environment. He does great with repetition, and discreet trial type learning (though I know this isn't for everyone). And Jelly is the perfect typical peer for him, willing and eager to participate.
This time, it is different. There is no end time, no number of weeks or birthday that will mean back to school. But that also means no deadline. We will do this as long as it is working for Moe and go back to the drawing board researching schools for when he's ready.
This is the Right Thing, even if it is also the Hard Thing. But once again, I am left wondering if there will ever be a place in this world for Moe.
This summer, we had Moe in a 30 hour a week in-home ABA program. I agreed because it seemed like a way to jump start his learning after two years of being enrolled in a preschool program with very little progress. And it was only ten weeks. At the end, I said I would never do that again.
And now, just three weeks later, I am doing it again.
It has been a hard three weeks that has affected all of us. Moe had a rough transition back to school. Behaviors that I had hoped would taper off after returning to a regular schedule escalated. We drove 50 miles a day to school and back, and each day on pickup, the report was the same: "Moe had a rough day." We added a dedicated aide. We adjusted Moe's daily schedule. We hoped it was just a transition period.
And this weekend, we made a decision. We took Moe out of school.
Of course, we consulted with a few people first. Jeff and I observed the class. And we could see that despite some really positive aspects, it was not going to suit his needs. They weren't set up for him. He was unhappy, in Moe's perfect storm of both bored and over-stimulated. And Jeff and I, through our research on schools last year, through the ups and downs and assessments and evaluations and so very many therapies (and therapists) have gotten good at knowing what is working for Moe and what isn't. Moe may simply not be ready for a classroom environment.
Moe had a good summer with his in-home ABA program. So for now, we are going to continue with this. As the end of summer approached, we considered whether we wanted to continue on or send Moe back to school. We thought the program would be a good complement to an afternoon ABA program. And even though Moe wasn't able to weigh in on the decision beforehand, his behavior told us he wasn't happy there. And we decided to listen to him.
I am nervous. It means I am, for the third time, going to be with Moe almost all of the time. He can be challenging, and I get the brunt of his frustration and aggression. Part of me thinks that if he is not ready for a classroom environment, isn't that exactly where he needs to be? How else will he get ready? But he really learns better at home in that one on one environment. He does great with repetition, and discreet trial type learning (though I know this isn't for everyone). And Jelly is the perfect typical peer for him, willing and eager to participate.
This time, it is different. There is no end time, no number of weeks or birthday that will mean back to school. But that also means no deadline. We will do this as long as it is working for Moe and go back to the drawing board researching schools for when he's ready.
This is the Right Thing, even if it is also the Hard Thing. But once again, I am left wondering if there will ever be a place in this world for Moe.
August 29, 2012
The Next Phase
Moe started his new school this week. We lost the familiarity of his classroom, his classmates and teachers, but truthfully many of his classmates and teachers have moved on anyway. We gained a 45 minute commute, and hopefully a school that is right for him.
We got off to a bit of a rocky start, in part I think because of an email I sent to his new teachers last week letting them know that Moe has been exhibiting some impulsive and aggressive behaviors. After a horrific Friday during which Moe had a major tantrum at Jelly's school that resulted in a little boy losing several strands of hair, and me bleeding and in tears, I felt I had to tell them so they could be aware.
The upshot is that they want Moe to have 1:1 support in the classroom. And while I wish they had told me this before school started, since it is now much harder to find a good person with availability, I think this will be good for everyone. We will, ideally, find someone from our current ABA team, which will allow some consistency between school and home.
After meeting with the preschool director yesterday, I felt much better. She observed him in the classroom and agreed with the teacher's assessment that he needs 1:1 support, at least for a while. But most important, she seemed to really believe in his abilities. She said "he's ready," for this class, and most importantly, to get started in earnest on an AAC (alternative and augmentative communication) program.
Although Moe has been exposed to several AAC methods, including sign language and picture/icon exchange systems, it has never been in a systematic way. He hasn't much seemed to "get it" and our prior AAC evaluation didn't reveal much. We also knew that the way our programs were set up, we would not be able to provide the consistency that Moe requires to learn, especially an entirely new way of interacting.
But Moe now seems to be a real communicator, is trying to speak, but with only a few sounds in his arsenal, it will be a long time before his ability will match his desire to be understood. He will have an AAC evaluation at his new school. One fantastic thing about this school, as opposed to the public program Moe was in before, is that they have an AAC specialist on staff, who pushes into the classroom twice a week. We will set up some 1:1 sessions as well, and I cannot wait to get started on helping open up the world to Moe and decrease his frustration (and I hope reduce the aggression).
The down side is that Moe has quite a packed schedule, with school in the morning, speech two days a week, OT once a week, and ABA every afternoon, some days until 6:30. With the addition of extra speech with the AAC specialist, I think we will need to make some adjustments. I am a firm believer that downtime is important too.
I am faring quite well in this whole thing. Since Moe's school is only 3 hours, and I didn't want to drive back and forth from home, I joined a really lovely "sports resort" in viewing distance from the school. It is a gym, but also has spa, cafe, wifi, and several lovely pools. It is a great place to unwind, work, exercise and actually shower every day! I have my first personal training session tomorrow. I have never worked with a trainer before and I am not sure what to expect. More on that later, I'm sure.
We got off to a bit of a rocky start, in part I think because of an email I sent to his new teachers last week letting them know that Moe has been exhibiting some impulsive and aggressive behaviors. After a horrific Friday during which Moe had a major tantrum at Jelly's school that resulted in a little boy losing several strands of hair, and me bleeding and in tears, I felt I had to tell them so they could be aware.
The upshot is that they want Moe to have 1:1 support in the classroom. And while I wish they had told me this before school started, since it is now much harder to find a good person with availability, I think this will be good for everyone. We will, ideally, find someone from our current ABA team, which will allow some consistency between school and home.
After meeting with the preschool director yesterday, I felt much better. She observed him in the classroom and agreed with the teacher's assessment that he needs 1:1 support, at least for a while. But most important, she seemed to really believe in his abilities. She said "he's ready," for this class, and most importantly, to get started in earnest on an AAC (alternative and augmentative communication) program.
Although Moe has been exposed to several AAC methods, including sign language and picture/icon exchange systems, it has never been in a systematic way. He hasn't much seemed to "get it" and our prior AAC evaluation didn't reveal much. We also knew that the way our programs were set up, we would not be able to provide the consistency that Moe requires to learn, especially an entirely new way of interacting.
But Moe now seems to be a real communicator, is trying to speak, but with only a few sounds in his arsenal, it will be a long time before his ability will match his desire to be understood. He will have an AAC evaluation at his new school. One fantastic thing about this school, as opposed to the public program Moe was in before, is that they have an AAC specialist on staff, who pushes into the classroom twice a week. We will set up some 1:1 sessions as well, and I cannot wait to get started on helping open up the world to Moe and decrease his frustration (and I hope reduce the aggression).
The down side is that Moe has quite a packed schedule, with school in the morning, speech two days a week, OT once a week, and ABA every afternoon, some days until 6:30. With the addition of extra speech with the AAC specialist, I think we will need to make some adjustments. I am a firm believer that downtime is important too.
I am faring quite well in this whole thing. Since Moe's school is only 3 hours, and I didn't want to drive back and forth from home, I joined a really lovely "sports resort" in viewing distance from the school. It is a gym, but also has spa, cafe, wifi, and several lovely pools. It is a great place to unwind, work, exercise and actually shower every day! I have my first personal training session tomorrow. I have never worked with a trainer before and I am not sure what to expect. More on that later, I'm sure.
August 2, 2012
My Uncle and the Yellow Beetle
After I graduated from business school and moved back to California, I bought my first new car: a 2000 yellow New Beetle. It had a manual transmission, and though I had driven a stick shift for several years, the new car felt different. The clutch was stiffer, and had that German push-down to get into reverse thing. It took me several minutes to get out of the dealer parking lot.
When speaking with my uncle about the new car, he told me "Don't worry. Soon it will feel like an old friend."
It's like this with all big transitions, isn't it? Anxiety builds as changes approach, but soon enough, what is new becomes the status quo.
We are just two and a half weeks away from the start of the new school year. I am nervous about the new school, about how Moe and I will respond to the long drive each morning, about being so far from Jelly's school, about hiring help to care for her. Our days will once again be turned upside down but I know, soon enough, it will all be routine.
April 17, 2012
Lost
As you know, I was recently selected as a semi-finalist (top eighteen) in the Notes and Words essay contest. Although I was disappointed to learn last night that I did not make the top 5, I am proud that I can finally share the piece with you here.
The bracelet arrived in the mail, small and shiny. I put it on my son’s four-year-old wrist, fumbling with the clasp.
For a few days, we both were acutely aware of its presence. When I tried to put it on him in the morning, Moe would squirm. I’d curse under my breath as I struggled to take it off at bath time. His wrist was pink where he tried to bite it.
I thought of the kids who wore this type of medical jewelry when I was young. The kid with the peanut allergy. “You can’t even use the same spoon as the batch with the nuts” my mom would tell me, “or he could die.” The diabetic kid at camp—the one I pretended not to stare at whenever he took out his kit. My friend with epilepsy.
But Moe doesn’t have any of those things. In fact, Moe doesn’t have anything. My son wears a bracelet because of what he is, and what he might do.
Moe is autistic.
Moe doesn’t speak. He is unlikely to respond to his name. And he loves to run.
Like many kids on the autism spectrum, Moe attends a special education day class. My husband drops him off in the morning, and six hours later, I pick him up, chatting with the other moms as we wait for the teachers to bring out our kids.
Every day, I spy my little Moe, with his blue eyes and curly blond hair, walking hand in hand with one of the people I entrust with his education and his care. Every day they bring him back to me.
Except one day, when they didn’t.
I wasn’t worried at first. Moe’s class is often last to appear, as they are the smallest bunch, preschoolers slowed down by oversized backpacks and the frequent need to investigate some bug or crack in the sidewalk. But when the rest of the class had arrived and I signaled to his teacher, she made an excuse about a forgotten backpack. I saw her run back toward the classroom, and I knew.
They had lost my little boy.
For a few minutes, I waited there, the still center of a time lapse photo. The other parents left. Teachers went back to their classrooms. The bus came and went. And I stood there, waiting.
During those seven or eight minutes, I thought of Moe’s bracelet—the one that had finally become part of his morning routine, the one he still fiddled with but no longer fought against. Why had I put so much faith in that thin piece of metal? It couldn’t keep him safe from the creek running behind the school, or getting hit by a car, or lost in the sea of children leaving school.
I still don’t know who found Moe, who had slipped into an empty classroom. His teacher brought him to me like nothing had happened. I cried on the drive home.
Later that day, Moe was wild. He ran maniacally around the house, screeching and crashing into the walls. I dodged his attempts to bite me as I wrestled him to the floor for a diaper change. His nails, overgrown because he refused to let me cut them, scratched red marks into my neck.
I was bursting with rage. Why couldn’t Moe just control himself? Why did everything have to be so difficult?
And why wasn’t I strong enough to handle it with grace and good humor?
F. Scott Fitzgerald wrote that the test of a first-rate intelligence is the ability to hold two opposed ideas at the same time, yet still retain the ability to function. To be able to see, for example, that things are hopeless and yet be determined to make them otherwise.
By that definition, I must be a genius.
We parents of special needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear—often in the course of a single day. We work tirelessly to help our kids succeed in the world, even when we have no idea what that success will look like. We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward.
And so it is that I send Moe out into the world every day, offering the only protection I can give him: hope, a hug, and a small silver bracelet.
The bracelet arrived in the mail, small and shiny. I put it on my son’s four-year-old wrist, fumbling with the clasp.
For a few days, we both were acutely aware of its presence. When I tried to put it on him in the morning, Moe would squirm. I’d curse under my breath as I struggled to take it off at bath time. His wrist was pink where he tried to bite it.
I thought of the kids who wore this type of medical jewelry when I was young. The kid with the peanut allergy. “You can’t even use the same spoon as the batch with the nuts” my mom would tell me, “or he could die.” The diabetic kid at camp—the one I pretended not to stare at whenever he took out his kit. My friend with epilepsy.
But Moe doesn’t have any of those things. In fact, Moe doesn’t have anything. My son wears a bracelet because of what he is, and what he might do.
Moe is autistic.
Moe doesn’t speak. He is unlikely to respond to his name. And he loves to run.
Like many kids on the autism spectrum, Moe attends a special education day class. My husband drops him off in the morning, and six hours later, I pick him up, chatting with the other moms as we wait for the teachers to bring out our kids.
Every day, I spy my little Moe, with his blue eyes and curly blond hair, walking hand in hand with one of the people I entrust with his education and his care. Every day they bring him back to me.
Except one day, when they didn’t.
I wasn’t worried at first. Moe’s class is often last to appear, as they are the smallest bunch, preschoolers slowed down by oversized backpacks and the frequent need to investigate some bug or crack in the sidewalk. But when the rest of the class had arrived and I signaled to his teacher, she made an excuse about a forgotten backpack. I saw her run back toward the classroom, and I knew.
They had lost my little boy.
For a few minutes, I waited there, the still center of a time lapse photo. The other parents left. Teachers went back to their classrooms. The bus came and went. And I stood there, waiting.
During those seven or eight minutes, I thought of Moe’s bracelet—the one that had finally become part of his morning routine, the one he still fiddled with but no longer fought against. Why had I put so much faith in that thin piece of metal? It couldn’t keep him safe from the creek running behind the school, or getting hit by a car, or lost in the sea of children leaving school.
I still don’t know who found Moe, who had slipped into an empty classroom. His teacher brought him to me like nothing had happened. I cried on the drive home.
Later that day, Moe was wild. He ran maniacally around the house, screeching and crashing into the walls. I dodged his attempts to bite me as I wrestled him to the floor for a diaper change. His nails, overgrown because he refused to let me cut them, scratched red marks into my neck.
I was bursting with rage. Why couldn’t Moe just control himself? Why did everything have to be so difficult?
And why wasn’t I strong enough to handle it with grace and good humor?
F. Scott Fitzgerald wrote that the test of a first-rate intelligence is the ability to hold two opposed ideas at the same time, yet still retain the ability to function. To be able to see, for example, that things are hopeless and yet be determined to make them otherwise.
By that definition, I must be a genius.
We parents of special needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear—often in the course of a single day. We work tirelessly to help our kids succeed in the world, even when we have no idea what that success will look like. We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward.
And so it is that I send Moe out into the world every day, offering the only protection I can give him: hope, a hug, and a small silver bracelet.
October 17, 2011
The Small Picture
We often tell ourselves to "look at the big picture." In business, for example, it makes sense to look at the larger competitive landscape rather than get caught up details of a particular product design. But sometimes, the story is in the small picture.
Moe doesn't talk, and it is sometimes hard to look past that. When we started speech therapy two years ago, we thought for sure Moe would have some language by now. And if I focus on that, it feels like he hasn't progressed at all. But as our OT always points out, Moe is changing. He doesn't chew as much as he used to. That nasty spitting habit he developed at the start of the school year seems to have all but disappeared. It is hard to see that going from biting to spitting to whatever is going to come next is progress, but what is important is that Moe is different now than he was even a few weeks ago. Change signals development, and that's what we want to see.
Moe's speech therapist at school sent an email the other day. She's noticing change in him as well:
Moe doesn't talk, and it is sometimes hard to look past that. When we started speech therapy two years ago, we thought for sure Moe would have some language by now. And if I focus on that, it feels like he hasn't progressed at all. But as our OT always points out, Moe is changing. He doesn't chew as much as he used to. That nasty spitting habit he developed at the start of the school year seems to have all but disappeared. It is hard to see that going from biting to spitting to whatever is going to come next is progress, but what is important is that Moe is different now than he was even a few weeks ago. Change signals development, and that's what we want to see.
Moe's speech therapist at school sent an email the other day. She's noticing change in him as well:
- Moe is much more observant this year! He is really watching and interested in speech activities. Last year it took much more effort to keep him engaged. This year he is focused and engaged in activities.
- I am modeling the words (CVCV reduplicated words such as "mama, dada" and animal sounds "baa-baa, moo-moo") and using cued speech to exaggerate the consonant sounds. During this activity, Moe watches intently. Sometimes he smiles, and he uses a contact point to touch each card. On a few occasions, he has mouthed the consonant.
- During snack, Moe picks up his desired food, then is asked to locate the correct matching icon from a field of 3 (receptive task). For highly desired food items, Moe is doing well choosing the correct picture regardless of placement. For less preferred food (even if he chooses it initially), he tends to choose the picture on the left. Again he understands the process of choosing the picture, placing it on the strip, handing it, and touching each picture.
- Playful sound imitation. Moe has attempted to imitate "ball, more" during the last month.
- Various speech activities (such as songs, books, and toys that go with the theme) - Moe is watching the activities, and uses gaze shifting between the materials and me. He is watching modeled words, and touches items when asked and given a modeled prompt.
- Non-verbal imitation - Moe requires initial hand-over-hand, then can sustain the motor movement for a few turns.
To an outside observer, Moe still doesn't talk. But if you look at the details, there are changes. He's starting to understand the picture exchange system a bit better. He seems to enjoy attending to the activities, and may even try to imitate, rather than just tune out. Moe's development - what we can see, anyway - may not happen in leaps and bounds, but it does seem to be happening, one step at a time.
September 3, 2011
Trusting Your Gut and Solving Behavior Problems
Moe's wonderful teacher from last year read my blog post about his recent aggression, and reminded me that something probably set him off. One comment on that post suggested we request a Functional Behavior Assessment (FBA). Since it was only the second week of school, and because it had only been two rough days, I didn't think that was appropriate yet. But it was a good reminder that there are tools to help us learn more. We don't ever have to just shrug our shoulders and hope it goes away.
An FBA, for those who aren't familiar, is a structured observation of the behavior over time. We start with the ABCs of behavior:
- Antecedent: what happened before the behavior began?
- Behavior: the behavior itself
- Consequence: what consequence did the behavior have?
For example, Moe pulled a child's hair. His teacher said that they had a long circle time and Moe was probably frustrated with having to sit still for that long. So the antecedent may have been a long circle time. The behavior was pulling a child's hair. The consequence was Moe got pulled into time out.
But if we looked at this over time, we might learn something different. In the above example, Moe was sitting at the end of the circle. We might find that Moe is more likely to get frustrated when it takes longer to sing goodbye to him, so we can adjust the antecedent to put him at the beginning of the circle, thus avoiding the behavior. Or we might find that the issue is only when he sits next to a particular child. Maybe that child makes a noise that bothers Moe, or he touches Moe, so simply separating them solves the problem. Or maybe the pulling has nothing to do with the other kids, but is a sensory need, so providing a therapy band on the chair (a trick our OT just taught us) or using a lap pad could help provide input if he does get frustrated.
We can also adjust the consequence to make sure an undesirable behavior isn't inadvertently reinforcing the behavior.We might find that Moe is pulling hair to get attention. Obviously we can't ignore an aggressive behavior, but we can be stoic in the way we respond. Or maybe Moe just wants to be out of the circle, and he does it so he can go to time out. By sending Moe to time out, we'd actually be encouraging Moe to pull hair again, since he got to leave circle time, exactly what he wanted.
In Moe's case, I had another thought. As I was writing a note to his teacher about some other things, I had a realization. Moe's lunchbox has been coming back almost full every day. He comes home and devours the entire contents. When Moe is hungry, he is very grumpy, and without words to express "feed me, dammit!" he gets very frustrated. We ran into this last year when I realized that our weekend meal schedule was about a half hour off from the school schedule. Simply adjusting our schedule at home made things much better.
I asked about this. Did Moe seem like he didn't want to eat at school? Or, since snacks are highly structured and they work on making requests, asking for more or help and sharing, perhaps they were asking too much of him at snack time? Bingo. His teacher said that Moe often takes a long time to make requests so snack time is over before he's eaten much. She said lunch is more about nutrition, and they aren't as demanding. But I know Moe needs those snacks throughout the day to keep him going.
I told her that Moe gets very frustrated when he's hungry, and asked that they figure out a way to make sure he eats more during the day. Because he loves to eat, snack time is a great time to work with him, but if he's not eating at all, that's a problem. Maybe they need to dial back the demands until he's better at it. (They are going to start using pictures of his food to help with choice-making, something he is good at.) Or maybe they ask for 5 spontaneous requests, but then give him free access. Or maybe give him bigger portions at each request. These are all small adjustments that could lead not only to reduced negative behaviors, but also to more successful learning at snack time, and a happier child who will be more receptive to learning throughout the remainder of the day.
Yesterday, his teacher reported that he ate better and he had a much better day. I hope it continues.
Learn more about Functional Behavior Assessments and how they can help you and your child. You can also use the concepts behind an FBA to solve behavior problems at home by charting the ABCs of your child's behaviors.
Learn more about Functional Behavior Assessments and how they can help you and your child. You can also use the concepts behind an FBA to solve behavior problems at home by charting the ABCs of your child's behaviors.
August 30, 2011
Hands are Not For Pulling Hair
I found a parking space in the lot at school this afternoon, which meant I could get out and wait for Moe with the other moms Jelly likes to get out of the car too. She is perhaps a little too comfortable at Moe's school now, so I am constantly trying to keep her close to me and out of the way of the many parents and kids filing out of school.
Moe's class came out but I didn't see Moe. One of the classroom aides said he was still in the room and would be out in a minute with his teacher, Ms J. I figured she was changing his diaper or putting his shoes back on for the umpteenth time.
When they finally came out, she said "it was a rough day today." She then told me that Moe pulled a classmate's hair (the cutest, littlest boy's adorable red curly hair). Apparently, he's been getting more and more aggressive in class.
My hunch is that Moe is having a tough time adjusting going back to the full school day. He's been tired, and like me, when he's tired, he's on a short fuse. When Moe is frustrated, he needs that deep pressure input to calm down. So he bites or grabs or pulls. It used to be that he would bite a chewy or a toy if it was available. Then he started sometimes going after the closest adult, especially if that adult was the one causing the frustration. He's never gone after other kids before.
But a couple of days ago, Moe hit Jelly. He didn't punch her or anything, just kind of played the drums on the top of her head for a second. It surprised her, but nothing more. We didn't think much of it, as it wasn't even directed at her specifically; she just happened to be in the way. But now it sounds like other kids have also been at the receiving end. Today, Ms J said they did a slightly longer circle time and Moe was probably tired and wanted to go home. "If only we could give him the words," she said.
I'm trying not to overreact. On days like this, I start to feel that I keep losing more of my sweet, fun, happy, go-with-the-flow little boy and that nothing we are doing is bringing him back. I know that he is growing and changing. I know lots of little kids can be aggressive. I can even tell myself that frustration is good - it means Moe has an opinion about how he wants things and might even get motivated enough to use some words. But this type of behavior is scary, and the only thing I can think right now is "I don't want this."
Last month, we were approved by the regional center for some one on one behavioral therapy services. I got in touch with the provider today and scheduled our intake appointment for later this month. I am thankful for this help, although 12 hours a month doesn't seem like much. I have such a huge list of things I want to work on, from adaptive (self-help) skills and toileting, to safety concerns and aggression. I don't even know where to start.
What is so frustrating about Moe's autism is that I never know what is coming next, but there is always something. The issues just seem to pile one on top of the other. In addition to the aggression, we're dealing with spitting, screaming (a high pitched blood-curdling screech that I'm sure has caused me permanent hearing loss), putting everything in his mouth (including leaves and flowers when we're outside), as well as the constant taking off of shoes, and the things we've had for a while like running off, taking off his diaper, stealing food, and generally getting into everything. That's not to mention the "regular" autism stuff: issues with regulation, inconsistent sleep patterns, lack of speech and communication, and fine and gross motor delays.
We came home from school, and Moe crashed on the couch, all giggles and smiles. Jelly is currently chasing him around the house, imitating everything he does, and shouting "come one Moe!" and he doesn't seem to mind. I hope tomorrow is a better day, but for now I'm soaking in this little bit of happiness. I might need the reserves later.
 |
| This is not the kid whose hair Moe pulled. But he's just as angelic looking as this girl. |
When they finally came out, she said "it was a rough day today." She then told me that Moe pulled a classmate's hair (the cutest, littlest boy's adorable red curly hair). Apparently, he's been getting more and more aggressive in class.
My hunch is that Moe is having a tough time adjusting going back to the full school day. He's been tired, and like me, when he's tired, he's on a short fuse. When Moe is frustrated, he needs that deep pressure input to calm down. So he bites or grabs or pulls. It used to be that he would bite a chewy or a toy if it was available. Then he started sometimes going after the closest adult, especially if that adult was the one causing the frustration. He's never gone after other kids before.
But a couple of days ago, Moe hit Jelly. He didn't punch her or anything, just kind of played the drums on the top of her head for a second. It surprised her, but nothing more. We didn't think much of it, as it wasn't even directed at her specifically; she just happened to be in the way. But now it sounds like other kids have also been at the receiving end. Today, Ms J said they did a slightly longer circle time and Moe was probably tired and wanted to go home. "If only we could give him the words," she said.
I'm trying not to overreact. On days like this, I start to feel that I keep losing more of my sweet, fun, happy, go-with-the-flow little boy and that nothing we are doing is bringing him back. I know that he is growing and changing. I know lots of little kids can be aggressive. I can even tell myself that frustration is good - it means Moe has an opinion about how he wants things and might even get motivated enough to use some words. But this type of behavior is scary, and the only thing I can think right now is "I don't want this."
Last month, we were approved by the regional center for some one on one behavioral therapy services. I got in touch with the provider today and scheduled our intake appointment for later this month. I am thankful for this help, although 12 hours a month doesn't seem like much. I have such a huge list of things I want to work on, from adaptive (self-help) skills and toileting, to safety concerns and aggression. I don't even know where to start.
What is so frustrating about Moe's autism is that I never know what is coming next, but there is always something. The issues just seem to pile one on top of the other. In addition to the aggression, we're dealing with spitting, screaming (a high pitched blood-curdling screech that I'm sure has caused me permanent hearing loss), putting everything in his mouth (including leaves and flowers when we're outside), as well as the constant taking off of shoes, and the things we've had for a while like running off, taking off his diaper, stealing food, and generally getting into everything. That's not to mention the "regular" autism stuff: issues with regulation, inconsistent sleep patterns, lack of speech and communication, and fine and gross motor delays.
We came home from school, and Moe crashed on the couch, all giggles and smiles. Jelly is currently chasing him around the house, imitating everything he does, and shouting "come one Moe!" and he doesn't seem to mind. I hope tomorrow is a better day, but for now I'm soaking in this little bit of happiness. I might need the reserves later.
August 22, 2011
Vaccines In Schools
Today was the first day of school, and it seems a fitting time to continue writing about childhood vaccinations. Many people believe that your child has to be vaccinated to go to school. They are certainly supposed to be. However, parents can get exemptions for their kids. The process for doing this varies from state to state, but here in California, a parent only needs to complete a Personal Belief Exemption (PBE) form.
It is necessary to allow these PBEs. There are children who are medically fragile or who have a history of serious reactions to vaccines, including dangerously high fevers or seizures. Certain religious groups may be opposed to vaccination. All of these children should have the right to go to school. However - and this is a big however - unvaccinated children should be the rare exception.
In my mind, that means just a few kids each year. But we can put a real number on this. From a public health perspective, we need to maintain high enough levels of immunity in the population so that diseases cannot spread. This is often called "herd immunity."
The concept of herd immunity is important to understand. A large percentage of a population needs to be inoculated against contagious diseases to keep those diseases from spreading. This ensures that those who do not have immunity are less likely to come in contact with someone who has the disease. The herd immunity rate is different for each disease, but range from 80-95%.
There is a wide variance in the herd immunity, even for a single disease. The actual level of immunity needed will vary depending on the specifics of the outbreak, including the effectiveness of the vaccines and closeness of the social network. A classroom would be a very close social network. Have you ever experienced a lice outbreak? It can spread pretty fast, and that requires actual physical contact. Ever see a cold go through a class? Last year, one cold took out half of Moe's class in one week. Imagine if that cold were measles or polio; it would be devastating.
The CA Department of Public Health publishes the vaccination rates for kindergarten classes in California. I looked at the 2010 rates of PBEs. At Moe's school, 5% of kids in kindergarten have exemptions. That's pretty good. An outbreak of most diseases would likely be contained quickly. This was the highest number of PBEs in all of our district.
The district we'd like to move to, however, has one school with a 16% PBE. That means only 84% of kids in kindergarten at that school are fully vaccinated. That is dangerously low. A major outbreak could definitely occur.
A few other schools in neighboring districts had similarly frightening rates of exemptions:
What is most interesting to me about these numbers is that many of the schools with the lowest rates of vaccination are at the schools with well educated parents who think they are doing the right thing for their children. They think they are enlightened because they question "big pharma" (who, by the way, only makes 1.5% of their profits from vaccines). They "trust their instincts" about vaccines, believing that so many vaccines must overwhelm their little babies' immune systems. But most parents can't possibly have an instinct about this. They aren't trained to evaluate risk. It is why we have science, and the evidence overwhelmingly tells us vaccines are safe.
Q: If everyone else is vaccinated, why does it matter if I don't vaccinate my child?
A: First, your child could come into contact with someone else who has the disease. It only takes one. Second, each child matters. If a class has twenty kids, it only takes 3 unvaccinated kids to drop below herd immunity levels. But be aware, even if your school has a 95% vaccination rate, that means at least 5% of the kids are at risk, but probably more. Herd immunity levels may contain a major outbreak, but any unvaccinated child could still get sick. Third, you are not just putting your child at risk. Your child could infect someone else, including a child too young to have received the vaccine.
Q: If vaccines aren't 100% effective, why should I put my child at risk for the possible side effects of the vaccines if he isn't going to be protected anyway?
A: Vaccines are not a guarantee against the disease. Yes, a child can get a vaccine and still get the disease, but it is much less likely. Even so, when most people are vaccinated, any given person is much less likely to come in contact with someone else who could infect him.
The risk of the vaccines themselves are very low. For example, according to the CDC, a person who gets measles faces the following risks:
Q: We use other ways to fight disease, like healthy eating, exercise, and dietary supplements. Isn't that enough?
A healthy lifestyle is important. I don't want to underestimate that. A strong immune system helps fight off or lessen the effects of many diseases, especially common colds and flus. But as one person in my mom's group said, "when measles comes around the Burger King eating, obese, never sees the daylight, TV-addicted, vaccinated kid will NOT get it and your kids WILL. It is a biological fact."
Please, please, please vaccinate your children. It is the right thing to do.
It is necessary to allow these PBEs. There are children who are medically fragile or who have a history of serious reactions to vaccines, including dangerously high fevers or seizures. Certain religious groups may be opposed to vaccination. All of these children should have the right to go to school. However - and this is a big however - unvaccinated children should be the rare exception.
In my mind, that means just a few kids each year. But we can put a real number on this. From a public health perspective, we need to maintain high enough levels of immunity in the population so that diseases cannot spread. This is often called "herd immunity."
The concept of herd immunity is important to understand. A large percentage of a population needs to be inoculated against contagious diseases to keep those diseases from spreading. This ensures that those who do not have immunity are less likely to come in contact with someone who has the disease. The herd immunity rate is different for each disease, but range from 80-95%.
There is a wide variance in the herd immunity, even for a single disease. The actual level of immunity needed will vary depending on the specifics of the outbreak, including the effectiveness of the vaccines and closeness of the social network. A classroom would be a very close social network. Have you ever experienced a lice outbreak? It can spread pretty fast, and that requires actual physical contact. Ever see a cold go through a class? Last year, one cold took out half of Moe's class in one week. Imagine if that cold were measles or polio; it would be devastating.
The CA Department of Public Health publishes the vaccination rates for kindergarten classes in California. I looked at the 2010 rates of PBEs. At Moe's school, 5% of kids in kindergarten have exemptions. That's pretty good. An outbreak of most diseases would likely be contained quickly. This was the highest number of PBEs in all of our district.
The district we'd like to move to, however, has one school with a 16% PBE. That means only 84% of kids in kindergarten at that school are fully vaccinated. That is dangerously low. A major outbreak could definitely occur.
A few other schools in neighboring districts had similarly frightening rates of exemptions:
- McAuliffe School: 12%
- Leroy Anderson Elementary: 22%
- Simonds Elementary: 30%
- Casa di Mir Montessori: 20%
- German International School: 36%
- Waldorf School Los Altos: 76%
What is most interesting to me about these numbers is that many of the schools with the lowest rates of vaccination are at the schools with well educated parents who think they are doing the right thing for their children. They think they are enlightened because they question "big pharma" (who, by the way, only makes 1.5% of their profits from vaccines). They "trust their instincts" about vaccines, believing that so many vaccines must overwhelm their little babies' immune systems. But most parents can't possibly have an instinct about this. They aren't trained to evaluate risk. It is why we have science, and the evidence overwhelmingly tells us vaccines are safe.
Q: If everyone else is vaccinated, why does it matter if I don't vaccinate my child?
A: First, your child could come into contact with someone else who has the disease. It only takes one. Second, each child matters. If a class has twenty kids, it only takes 3 unvaccinated kids to drop below herd immunity levels. But be aware, even if your school has a 95% vaccination rate, that means at least 5% of the kids are at risk, but probably more. Herd immunity levels may contain a major outbreak, but any unvaccinated child could still get sick. Third, you are not just putting your child at risk. Your child could infect someone else, including a child too young to have received the vaccine.
Q: If vaccines aren't 100% effective, why should I put my child at risk for the possible side effects of the vaccines if he isn't going to be protected anyway?
A: Vaccines are not a guarantee against the disease. Yes, a child can get a vaccine and still get the disease, but it is much less likely. Even so, when most people are vaccinated, any given person is much less likely to come in contact with someone else who could infect him.
The risk of the vaccines themselves are very low. For example, according to the CDC, a person who gets measles faces the following risks:
- Pneumonia: 6 in 100
- Encephalitis: 1 in 1,000
- Death: 2 in 1,000
But the risk of major side effect of the MMR vaccine (encephalitis or severe allergic reaction) is literally one in a million.
Q: We use other ways to fight disease, like healthy eating, exercise, and dietary supplements. Isn't that enough?
A healthy lifestyle is important. I don't want to underestimate that. A strong immune system helps fight off or lessen the effects of many diseases, especially common colds and flus. But as one person in my mom's group said, "when measles comes around the Burger King eating, obese, never sees the daylight, TV-addicted, vaccinated kid will NOT get it and your kids WILL. It is a biological fact."
Please, please, please vaccinate your children. It is the right thing to do.
July 14, 2011
A Magnificent Flashback
Because the summer break is almost half way over...
And because the summer program at Moe's school finishes on Friday and I'm nervous about starting at a new place for the rest of the summer...
And because I had a post due today over at Hopeful Parents and I didn't have time to write another one...
For today's Alphabe-Thursday post, I'm going to recycle a post from the very beginning of this school year, Moe's first year in preschool. Click on over to read The Magnificent Mrs. M.
And because the summer program at Moe's school finishes on Friday and I'm nervous about starting at a new place for the rest of the summer...
And because I had a post due today over at Hopeful Parents and I didn't have time to write another one...
For today's Alphabe-Thursday post, I'm going to recycle a post from the very beginning of this school year, Moe's first year in preschool. Click on over to read The Magnificent Mrs. M.
May 20, 2011
IEP Season
Spring is in the air, and though many of you might be sneezing and wheezing with seasonal allergies, most of the parents at Moe's school are having reactions to the other thing that starts coming up around mid-April: IEP meetings.
Yesterday, we had Moe's Individual Education Plan (IEP) meeting. We discussed the year's progress against his current IEP as well as the aspects of the Competent Learner Model that is used in our special education classrooms.
It is hard to believe that one year ago, we were in our first IEP meeting, getting ready to transition out of our home-based ABA program and into preschool. We had no idea if this program was a good one. We set goals that were a bit of a shot in the dark.
Moe did well this year. His strength's are in areas of problem solving, and I think I'll take some time over the next few weeks to go through the specifics of the CLM and how he's progressed. Moe is also making progress interacting with adults. His teacher believes this is a precursor to playing with other kids.
Next year, Moe will get the same services he's getting this year: the autism preschool program with our beloved Mrs. M, as well as some group and individual speech therapy. We set out fewer IEP goals than last year, but they are more focused, especially around communication and play skills. There are also some pre-academic goals around reading and writing. The highlight of the meeting was when Mrs. M showed us some tracings Moe recently did of his name. He required assistance, but she said he was excited about writing his name and did a pretty good job, especially with the first letter!
Our biggest challenge will be getting Moe consistently using his skills, since he will often do something a few times, then be done with it. Then out of the blue, a few days or weeks later, he'll do it again.
Because the classroom uses the CLM, they are always working on moving the kids through the areas the model identifies as required for school success. So even if certain skills are not identified as IEP goals, they are still covered as part of the CLM.
I am disappointed that Moe wasn't able to meet our speech goals this year. We had hoped he'd have 100 words (10 words in 10 categories, like toys, foods, animals, etc.) but we've identified 5 words that he uses fairly consistently: yeah, more, open, frog and jumping. So next year, we've set a goal of 15 words. It is our hope that once he starts speaking, he'll acquire new words rapidly, but for now, maybe focus will help.
For many families, the IEP process can be stressful and contentious, sometimes involving advocates and lawyers. I think it can be especially hard to get services for kids with high-functioning autism and Asperger's, since they often assess well and get good grades. We could fight for more, and the one area that bothers me is the extended school year program, which only covers four of the 10 weeks of summer. We're going to be sending Moe to a private preschool for the second half of the summer, and we've thought about asking the school district to pay for this, since Moe clearly needs to be engaged during that time. But as of right now, we've chosen not to take on that fight.
How's everyone else doing with their IEPs?
Yesterday, we had Moe's Individual Education Plan (IEP) meeting. We discussed the year's progress against his current IEP as well as the aspects of the Competent Learner Model that is used in our special education classrooms.
It is hard to believe that one year ago, we were in our first IEP meeting, getting ready to transition out of our home-based ABA program and into preschool. We had no idea if this program was a good one. We set goals that were a bit of a shot in the dark.
Moe did well this year. His strength's are in areas of problem solving, and I think I'll take some time over the next few weeks to go through the specifics of the CLM and how he's progressed. Moe is also making progress interacting with adults. His teacher believes this is a precursor to playing with other kids.
Next year, Moe will get the same services he's getting this year: the autism preschool program with our beloved Mrs. M, as well as some group and individual speech therapy. We set out fewer IEP goals than last year, but they are more focused, especially around communication and play skills. There are also some pre-academic goals around reading and writing. The highlight of the meeting was when Mrs. M showed us some tracings Moe recently did of his name. He required assistance, but she said he was excited about writing his name and did a pretty good job, especially with the first letter!
Our biggest challenge will be getting Moe consistently using his skills, since he will often do something a few times, then be done with it. Then out of the blue, a few days or weeks later, he'll do it again.
Because the classroom uses the CLM, they are always working on moving the kids through the areas the model identifies as required for school success. So even if certain skills are not identified as IEP goals, they are still covered as part of the CLM.
I am disappointed that Moe wasn't able to meet our speech goals this year. We had hoped he'd have 100 words (10 words in 10 categories, like toys, foods, animals, etc.) but we've identified 5 words that he uses fairly consistently: yeah, more, open, frog and jumping. So next year, we've set a goal of 15 words. It is our hope that once he starts speaking, he'll acquire new words rapidly, but for now, maybe focus will help.
For many families, the IEP process can be stressful and contentious, sometimes involving advocates and lawyers. I think it can be especially hard to get services for kids with high-functioning autism and Asperger's, since they often assess well and get good grades. We could fight for more, and the one area that bothers me is the extended school year program, which only covers four of the 10 weeks of summer. We're going to be sending Moe to a private preschool for the second half of the summer, and we've thought about asking the school district to pay for this, since Moe clearly needs to be engaged during that time. But as of right now, we've chosen not to take on that fight.
How's everyone else doing with their IEPs?
May 4, 2011
Could We?
We went to an open house last weekend. It's in the neighborhood we want to live in, just blocks from the house we used to rent. It's an historic home, completely renovated. The master suite has a sitting room almost as big as our current bedroom. The upstairs bathroom has a claw-foot tub. And the kitchen looks like this:
It is our dream house. One I can picture growing old in, hosting book clubs and birthday parties and thanksgiving dinners. Figuring out ways to keep our teenage daughter from sneaking out of the upstairs balcony. The yard is lovely.
But the dream house is not in our current school district. If we bought this house, we would have to change Moe to a new school, something we said we absolutely would not do until he was ready for kindergarten and would leave his current program anyway.
But this house. Just look at this bathroom.
So we asked ourselves, could we? Could we take Moe out of the school with the teachers we love so much? The other school district is good, arguably better, at least for general education. Who's to say the new program wouldn't be even better than the one we lucked into here? So we're researching. Asking around. Thinking about it.
The truth is, we can't afford this house. But if the stars aligned just right, and the sellers lowered their asking price and we stretched a little, maybe we could. But probably not. But you never know. For now, we're just watching and waiting, hoping and dreaming, and asking ourselves: could we?
This post written as part of Jenny Matlock's Alphabe-Thursday. Today we are on the letter C, which in this post could stand for "Could we?" or my alternate title, "Chef's Kitchen."
But the dream house is not in our current school district. If we bought this house, we would have to change Moe to a new school, something we said we absolutely would not do until he was ready for kindergarten and would leave his current program anyway.
But this house. Just look at this bathroom.
The truth is, we can't afford this house. But if the stars aligned just right, and the sellers lowered their asking price and we stretched a little, maybe we could. But probably not. But you never know. For now, we're just watching and waiting, hoping and dreaming, and asking ourselves: could we?
This post written as part of Jenny Matlock's Alphabe-Thursday. Today we are on the letter C, which in this post could stand for "Could we?" or my alternate title, "Chef's Kitchen."
January 14, 2011
The One Where The Boy is Coughing and The Girl Turns on the Charm
Moe has a cold again. It’s a nasty one, with an ugly cough. He hasn’t wanted to eat more than crackers and the occasional cup of juice. I kept him home Tuesday and Wednesday, and when I called to tell his teacher he would be out, she said 3 other kids have been out too. Clearly, it’s going around.
Yesterday, Moe woke up and seemed a little better so I sent him to school. He seemed so excited to go, not wanting to spend another day at home any more than I wanted him here all day. He goes a little stir-crazy when we can’t leave the house. When the phone rang at noon, I knew it would be his teacher. He had been coughing a lot and wasn’t eating. I picked him up, feeling awful for sending him.
While Moe was at school for the morning, I took Jelly to the park. I’ve started hanging out with Moe’s old playgroup again. Many of the moms have kids Jelly’s age now too. We dropped out of the weekly playdate a long time ago, and it is strange to be back with the group again, especially without Moe there. But it’s good for Jelly to be with other kids, and she especially loved watching the big girls play. She learned to climb to the top of the play structure where she found the big sunflower at the top. “Flower!” is one of her favorite words and she was so excited to find it there.
Jelly is starting to lose some of her shyness, which is fantastic. But at one point, she noticed an older man, who was sitting on the benches nearby. She walked right up to him, touching his cane and saying “hello!” The man was happy to see her, and I had my first taste of striking that balance between protecting my little girl, wanting her to feel safe and believe in the goodness of people, and planting the seeds of distrust in strangers. We said good bye to the man, as Jelly signed "friend."
The rest of the afternoon wasn’t fun. I canceled the babysitter and music therapy. Jelly missed her nap, and around 4:00 Moe suddenly ran out of the living room and into his bedroom. This isn’t unusual, but when I went to check on him, he was in his bed, fast asleep. He has napped maybe once since his second birthday, so I knew he wasn’t feeling well. By the time my parents, who are visiting this weekend, arrived at the house, Moe had woken up but was lying on the couch, looking utterly pathetic.
Although a little Motrin seemed to help him feel better, the nap threw off his sleep enough that, even with his regular melatonin pill, he didn’t fall asleep until after 9pm. Then, like salt in the wound, Jelly was up at 3:00 in the morning. Why is it that on the days Moe actually sleeps through the night, Jelly is awake? I think she’s teething, but it would be so much better if she could do it on the days Moe is us up anyway.
Yesterday, Moe woke up and seemed a little better so I sent him to school. He seemed so excited to go, not wanting to spend another day at home any more than I wanted him here all day. He goes a little stir-crazy when we can’t leave the house. When the phone rang at noon, I knew it would be his teacher. He had been coughing a lot and wasn’t eating. I picked him up, feeling awful for sending him.
While Moe was at school for the morning, I took Jelly to the park. I’ve started hanging out with Moe’s old playgroup again. Many of the moms have kids Jelly’s age now too. We dropped out of the weekly playdate a long time ago, and it is strange to be back with the group again, especially without Moe there. But it’s good for Jelly to be with other kids, and she especially loved watching the big girls play. She learned to climb to the top of the play structure where she found the big sunflower at the top. “Flower!” is one of her favorite words and she was so excited to find it there.
Jelly is starting to lose some of her shyness, which is fantastic. But at one point, she noticed an older man, who was sitting on the benches nearby. She walked right up to him, touching his cane and saying “hello!” The man was happy to see her, and I had my first taste of striking that balance between protecting my little girl, wanting her to feel safe and believe in the goodness of people, and planting the seeds of distrust in strangers. We said good bye to the man, as Jelly signed "friend."
Although a little Motrin seemed to help him feel better, the nap threw off his sleep enough that, even with his regular melatonin pill, he didn’t fall asleep until after 9pm. Then, like salt in the wound, Jelly was up at 3:00 in the morning. Why is it that on the days Moe actually sleeps through the night, Jelly is awake? I think she’s teething, but it would be so much better if she could do it on the days Moe is us up anyway.
She was up for a while, only wanting mommy. But the girl knows how to turn on the charm. Long after my patience for letting her cry has evaporated, and I’ve given in to just sitting with her for a while in the rocking chair, she placed her head on my chest, gripping my arm with one tiny hand and her teddy bear in the other. Gets me every time.
Today’s post was written as part of the Red Dress Club. This week’s challenge had us choose an item in our pantry, and include every word in the ingredients in our post. I chose a jar of sunflower seed butter. Ingredients: Sunflower seeds, evaporated cane juice, salt.
December 22, 2010
Too Much Information
Just this week, I've learned that autism may be caused by: mitochondrial dysfunction, living too close to freeways, and living near a cement plant. In the past, I've also read that autism is caused by: heredity, other genetic mutations, vaccines, bad parenting, heavy metals in the bloodstream, premature birth, and allergies. The list goes on. (Read this great summary of the flaws in some of the recent research.)
Within autism, there are so many diagnoses and co-morbid conditions: high functioning to severe, Asperger's, apraxia, sensory processing disorder, hypotonia, hyperlexia, and echolalia to name a few.
And then there are the plethora of therapies out there, including but not limited to: ABA, Floortime, SonRise, Pivotal Response Training, Relationship Development Intervention, occupational therapy, speech and language therapy, sensory integration therapy, music therapy, recreation therapy, riding horses, surfing, gluten free casein free diets, chelation, B12 shots, other vitamin and mineral supplements, essential fatty acids, fish oil supplements, gut treatments including probiotics and antifungals, and hyperbaric oxygen therapy.
It is enough to make a person crazy.
Our approach has always been:
- Let the science guide us.
- Go to trusted professionals for guidance.
- Do no harm.
- Do what works for our family.
We recently added some music therapy, which is also a lot like ABA but using music (instruments, musically based games, singing, etc.). This is not "traditional" but because Moe is so musically inclined, we thought at the very least it could be fun for him. Our music therapist also teaches older spectrum kids to play instruments so my hope is we are building a basis for that in the future as well.
We've recently decided to add in some more OT. It's not going to be strictly sensory integration therapy but we will focus a lot on Moe's sensory-seeking needs. He has a lot of them (chewing, spinning, swinging, etc.). We've had to delay starting because of all our illnesses but I hope we can give Moe some of that extra input he needs to help keep himself more regulated and focused throughout the day.
I am not advocating this approach for everyone, but it is what we can handle. I do think it makes a lot of sense to start small and add in as you go, both in terms of keeping some sanity and for tracking progress. But every day I question whether we're doing the right things, too much or too little. Jeff seems more confident in our approach, and that's good, because I'm sure I'd be all over the map if these decisions were mine alone.
Autism may be a puzzle, but its really the maze of options for parents that is so confounding.
December 18, 2010
Small Things Saturday: The Elf on the Wall
October 18, 2010
Too Cute
It's been a busy week, and I do plan to write about what we've been up to around here. For now, enjoy this, Moe's first official school photo. The aides at school said they worked really hard to make sure to get a good picture. I'd say they succeeded.
October 7, 2010
A little progress goes a long way
Ahhh...quiet. There hasn't been enough of that this week. If you read my last post, or have followed my blog for a while, you know that we've been having some pretty serious sleep issues for about the past year. I won't bore you with the details of the rest of this week. Suffice it to say that we've been experimenting and have had some successes and some failures. Last night, Moe got to sleep on his own without melatonin (success). Tonight, we ate our spaghetti to Moe's screaming in the background (failure).
On top of that, Jelly has been sick with a fever, runny nose, the works. And she only wants mommy. When Jeff even tries to go near her, she screams "no!" (her new favorite word) and clings harder to me. It was cute once.... Once.
Despite all of that, Moe had an interesting day at school yesterday. When I picked him up, his teacher, the Magnificent Mrs M, came running over to me to tell me how talkative Moe was! She put a list in his daily communication book of everything he said that day: stamp, morning, four, please, open please, more, more pear, and mad.
These were pretty interesting to me for a few reasons.
Of course, I'm so proud, but I'm also trying to figure out what made that day so great and how I can recreate it. The rest of the day, Moe continued to be happy and well regulated, though less chatty than he was at school. The only thing I know is that this fabulous day came after Moe had a full night's sleep, which is something I seem to have very little control over. I don't think this is a coincidence.
It has been a tough week, but this note was just what I needed to make it through the rest of the week. A little progress goes a long way.
On top of that, Jelly has been sick with a fever, runny nose, the works. And she only wants mommy. When Jeff even tries to go near her, she screams "no!" (her new favorite word) and clings harder to me. It was cute once.... Once.
Despite all of that, Moe had an interesting day at school yesterday. When I picked him up, his teacher, the Magnificent Mrs M, came running over to me to tell me how talkative Moe was! She put a list in his daily communication book of everything he said that day: stamp, morning, four, please, open please, more, more pear, and mad.
These were pretty interesting to me for a few reasons.
- "Morning" was in response to Mrs M saying "Good morning, Moe." Socially appropriate!
- "Open please" and "More pear" are two word phrases. Haven't heard those before!
- He said "mad" when he was tired of the aide, Super K, working with him at snack. He expressed an emotion! (I haven't mentioned Super K before, but she's great and I'm sure I'll be mentioning her again.)
Of course, I'm so proud, but I'm also trying to figure out what made that day so great and how I can recreate it. The rest of the day, Moe continued to be happy and well regulated, though less chatty than he was at school. The only thing I know is that this fabulous day came after Moe had a full night's sleep, which is something I seem to have very little control over. I don't think this is a coincidence.
It has been a tough week, but this note was just what I needed to make it through the rest of the week. A little progress goes a long way.
September 15, 2010
The Magnificent Mrs. M
Moe is now in his fourth week of preschool, and we’re pretty thrilled about how it is going. Despite the fact that I have already had to pick him up early from school a few times because of a bloody lip and a bout of, let’s just say a stomach ache, I am for the first time 100% positive that he is in the right program.
There are many, many different programs for kids with autism and they are based on many, many different philosophies, like Floortime, ABA, or PRT. Ours is based on the Competent Learner Model. In practice, most of these programs seem to me to look very similar, and I’m convinced that the success of any given program depends first and foremost on the skill of the teachers involved. And Moe’s teacher, the Magnificent Mrs. M, is the best. There are also two permanent aides in the classroom.
Mrs. M sends home a communication book every day with a quick note about what happened in class that day. I think all of the kids get the same basic summary, but often there will also be a little handwritten note from Mrs. M. Parents are encouraged to write in the book to send messages back as well.
Here is part of the note from the first day of class.
Moe, who barely spoke a word the entire summer, talked in class. This does not seem to be a fluke. From the second day of school:
Check out my mad photo editing skills!
The book is full of notes like this. Every day, Moe has a little bit to say. Even last week, when I picked him up early because of aforementioned stomach issue, Moe’s note said he “did the hand motions for my favorite song…The Monkey!” And this seems to be transferring to home as well. Moe has been using words here and there, and he even spontaneously asked for water – using the sign for “I want” while saying “water.” I didn’t prompt him, he just made a request. This is HUGE. It means he isn’t just labeling things. He is starting to communicate. I’m hopeful it continues.
Here is my favorite note so far. I think you’ll understand why I think there is something very special about this classroom. This is from the day after Moe had fell on the playground.
He’s the light of my day too.
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