Last week was a roller coaster of behavior and emotion--from some of the worst days Ben has ever had (see my last post), to some of his best as the week finished out. The catalyst for such dramatic change was pharmaceutical in nature--I finally followed my gut, made an executive, maternal decision, and pulled Ben off his then-current medicine in favor of the ADHD medication he was taking last year. And wonderfully, miracles do happen.
I made this switch on Wednesday morning, after Tuesday left both me and Ben's teacher wondering if Ben was going to be able to succeed in a mainstream classroom. Around 10:30 Wednesday morning I got a short email from Ben's teacher that said he was working well, staying on task, and had not hit, kicked, or spit on another person yet. That afternoon I got another short note simply stating, "So far, so good!!" And as the pinnacle of the day, when I went to his classroom to pick him up after school, his teacher said that the change in Ben was "night and day." With tears in her eyes, she said, "He can learn if he's like this. He can do it."
There's always a catch, though, and here it is: The reason (well, one of them) we pulled Ben off the Adderall in the first place is because it doesn't always work very consistently. It may be a week, or a month, or maybe more, but sooner or later, it will stop working. And then we'll have to start playing with his dosages, shifting him up and up until he can't take anything higher. In the meantime, he'll have good days and bad days, and days that start good but go bad before they're over... And then it will be time to try a "cousin" medicine, hopefully getting the same good result that we had with the Adderall. Again, after a while that medication will stop working, and we'll have to adjust, and adjust, and eventually switch back... So maybe we've exited the roller coaster, but making this medication work effectively will be a tightrope act. Less action; same knot in my stomach.
Progress is being made toward getting an IEP in place. The speech therapist did some testing last week, and then called me to say that she has a bit more to do--hopefully this week. The principal also called me to say that he's asking her to make Ben her top priority (problem is, she has to conduct hearing screenings at a couple schools this week, so her schedule's tight). On his initial testing though, Ben demonstrated a pretty clear deficit in understanding emotional signals. He could identify when a picture depicted someone who was happy (smiling, laughing, etc.) But anything that wasn't happy was relegated to the category of "sad" for Ben. He couldn't identify angry, embarrassed, surprised, etc. All those were simply "sad." Hopefully the rest of the testing will be done this week and an IEP will follow shortly.
Sunday, August 30, 2009
Tuesday, August 25, 2009
Was Annie Right?
Little red-headed Annie sings that the sun will come out tomorrow. I hope she's right, because there's a heck of a storm blowing today.
Ben's "great" first day has rapidly descended into disaster. On day two, Friday, his teacher walked him out to the car and said that from lunch on, Ben couldn't seem to stop punching and kicking other kids, completely unprovoked. We wondered if the stimulation of the lunch room was too much for him. Yesterday, Monday, I sent a behavior chart to school, offering Ben the chance to earn stickers for good behavior and later convert those stickers into prizes from me. He came home with three stickers, and a small note saying that he had some trouble with hitting other kids, particularly in the afternoon, but generally he was OK.
Today Ben said that he forgot to take his chart to school (he didn't; it was in his backpack, just where I showed him), but he announced when he got into the car after school that he had a "bad" day. When I took him to the library this afternoon he proved it by clawing gouges into my arms, kicking bruises onto my legs, and pushing dozens of books off the shelves while I tried to hold him. And an hour ago I received an email from his teacher, who wanted to know what to do. As if I might know.
She is alone in a classroom full--FULL--of six-year-olds, and she simply doesn't have the time to devote to Ben alone. Today was apparently the worst day yet: hitting, kicking, spitting until she feared for the safety of his classmates. He needs one-on-one help; he needs people who can take him out of the classroom when he falls apart and help him get calmed and centered again. He needs more than his teacher can offer, and I don't know what to do about that.
I'm wavering between crying and punching something. I'm angry that we're a week into school, and despite all my insistence that Ben have an IEP in place before school began, we are still waiting for the speech therapist to come to the school and do her testing so that her parts of the plan can be included. In the meantime, he's falling fast, and no one seems to be able to catch him. And I'm starting to question whether he's going to be able to succeed in a mainstream classroom.
Tomorrow, I'm rebelling against the psychiatrist who put Ben on new meds two weeks ago. I told him that I thought they were making Ben more difficult and impulsive than ever; he warned me that it will take a long time to find a medication, or combination of medications, that will work for Ben. But, guess what, doc? Ben doesn't have a lot of time. He doesn't even have a little time. So, even though you don't want to, I'm taking Ben off your meds and putting him back on the ADHD meds that he took last year. Were they perfect? No. But they worked far better than what he's on now, and we're in a crisis. We've only been in school for four days, and we're already in a crisis. So I'm taking charge. Next summer, we'll explore other options.
Tomorrow, I'm calling the school and making sure that Ben's testing is complete this week, and that his IEP is scheduled for next week. Tomorrow, I'm calling the school district and perhaps the state to find out exactly what resources are available if I'm willing to make enough noise to get them. Tomorrow, I'm calling an end to the storm. I sure hope Annie was right, because tomorrow, I need the sun to come out again. And so does Ben. Tomorrow.
Ben's "great" first day has rapidly descended into disaster. On day two, Friday, his teacher walked him out to the car and said that from lunch on, Ben couldn't seem to stop punching and kicking other kids, completely unprovoked. We wondered if the stimulation of the lunch room was too much for him. Yesterday, Monday, I sent a behavior chart to school, offering Ben the chance to earn stickers for good behavior and later convert those stickers into prizes from me. He came home with three stickers, and a small note saying that he had some trouble with hitting other kids, particularly in the afternoon, but generally he was OK.
Today Ben said that he forgot to take his chart to school (he didn't; it was in his backpack, just where I showed him), but he announced when he got into the car after school that he had a "bad" day. When I took him to the library this afternoon he proved it by clawing gouges into my arms, kicking bruises onto my legs, and pushing dozens of books off the shelves while I tried to hold him. And an hour ago I received an email from his teacher, who wanted to know what to do. As if I might know.
She is alone in a classroom full--FULL--of six-year-olds, and she simply doesn't have the time to devote to Ben alone. Today was apparently the worst day yet: hitting, kicking, spitting until she feared for the safety of his classmates. He needs one-on-one help; he needs people who can take him out of the classroom when he falls apart and help him get calmed and centered again. He needs more than his teacher can offer, and I don't know what to do about that.
I'm wavering between crying and punching something. I'm angry that we're a week into school, and despite all my insistence that Ben have an IEP in place before school began, we are still waiting for the speech therapist to come to the school and do her testing so that her parts of the plan can be included. In the meantime, he's falling fast, and no one seems to be able to catch him. And I'm starting to question whether he's going to be able to succeed in a mainstream classroom.
Tomorrow, I'm rebelling against the psychiatrist who put Ben on new meds two weeks ago. I told him that I thought they were making Ben more difficult and impulsive than ever; he warned me that it will take a long time to find a medication, or combination of medications, that will work for Ben. But, guess what, doc? Ben doesn't have a lot of time. He doesn't even have a little time. So, even though you don't want to, I'm taking Ben off your meds and putting him back on the ADHD meds that he took last year. Were they perfect? No. But they worked far better than what he's on now, and we're in a crisis. We've only been in school for four days, and we're already in a crisis. So I'm taking charge. Next summer, we'll explore other options.
Tomorrow, I'm calling the school and making sure that Ben's testing is complete this week, and that his IEP is scheduled for next week. Tomorrow, I'm calling the school district and perhaps the state to find out exactly what resources are available if I'm willing to make enough noise to get them. Tomorrow, I'm calling an end to the storm. I sure hope Annie was right, because tomorrow, I need the sun to come out again. And so does Ben. Tomorrow.
Thursday, August 20, 2009
Funny and Crazy!
It's official--the school year has begun. I spent the entire day with my phone in my hand and my stomach in my throat, wondering how Ben was going to do and whether I was going to get a call from the school.
I had another meeting with the school psychologist, the principal, and Ben's teacher earlier this week. It was the first time I'd met with his teacher, and so after the psychologist told her that Ben was going to have an IEP for Autism, I started to explain to her some of the struggles that Ben had last year (and the year before). Before I'd gotten through my list, this wonderful teacher stopped me and said, "Now, I don't know if you already know this, but my second son [who is now grown] has Asperger's [a form of Autism, for those of you who don't know]." She continued, "So, I know that every child is unique and Ben's situation won't be exactly like my son's, but I just wanted you to know that I understand." I could have started crying right there. Fortunately, I'm not much of a crier, but you have to imagine the wave of relief that rolled over me when I realized that she's not going to think Ben is just a strange, difficult, "bad" little boy. Better yet, she understands that when he's acting out, he's just trying to communicate that he's in overload mode. Over the course of about 1/2 hour, we strategized all kinds of interventions that we think will help Ben when he's struggling, and as the meeting ended, she encouraged me to bring Ben in early to the school Open House the next day, so she could show him around without the extra chaos of other parents and children.
At the Open House, Ben took to her like chocolate to milk--he immediately asked her to show him all the things in the room that she could. She had the lights at about 3/4 brightness in the room so that the atmosphere was calm. She had created a special spot on the story rug for him that would allow him to have some space away from the other kids if he needed it during rug time; she had his desk set up at the end of the row, nearest her desk, and away from all but one other child on his left--a child she knew would be relatively easy to get along with. She showed him how he can slide his desk to another spot away from the other kids if he starts to feel upset by them. She showed him his special spot to stand (on the top step, in front of the other kids) when lining up in the morning after recess. He heard every word and it was awesome.
And then we went down to my other son Joey's classroom. Bright florescent lights, echoing walls, and loads of other people. Ben sat in the corner with some blocks for about 5 minutes, and then he began throwing chairs onto their backs, slapping strangers on their bottoms and laughing, spinning the teacher's big desk chair, pushing papers off her desk, blowing and spitting in my face when I tried to hold him--total, complete meltdown. And all my euphoria and hopefulness that we'd make it through this year vanished like dew from a too-warmed lawn.
And then it was today. I made sure Ben got his meds, which sometimes work and sometimes don't, plenty early this morning. I got Ben dressed and made his breakfast--the wrong breakfast, he yelled--and then I made the right breakfast (some battles are not worth fighting--not on the first day of school). He shouldered his backpack and dad drove them to school. And I waited, and waited, and waited... and when the school's number showed up on my caller ID about an hour before the school day ended, my heart sank. False alarm--the principal needed some help with the website. To his knowledge, Ben was doing fine.
My dh Chris (who doesn't work on Thursdays) and I drove over to the school and waited for Ben outside when the final bell rang. He appeared, ran into my arms, and exclaimed, "My teacher is funny and crazy!" We went inside and his teacher confirmed that Ben had a great day.
One down, too many to count to go.
I had another meeting with the school psychologist, the principal, and Ben's teacher earlier this week. It was the first time I'd met with his teacher, and so after the psychologist told her that Ben was going to have an IEP for Autism, I started to explain to her some of the struggles that Ben had last year (and the year before). Before I'd gotten through my list, this wonderful teacher stopped me and said, "Now, I don't know if you already know this, but my second son [who is now grown] has Asperger's [a form of Autism, for those of you who don't know]." She continued, "So, I know that every child is unique and Ben's situation won't be exactly like my son's, but I just wanted you to know that I understand." I could have started crying right there. Fortunately, I'm not much of a crier, but you have to imagine the wave of relief that rolled over me when I realized that she's not going to think Ben is just a strange, difficult, "bad" little boy. Better yet, she understands that when he's acting out, he's just trying to communicate that he's in overload mode. Over the course of about 1/2 hour, we strategized all kinds of interventions that we think will help Ben when he's struggling, and as the meeting ended, she encouraged me to bring Ben in early to the school Open House the next day, so she could show him around without the extra chaos of other parents and children.
At the Open House, Ben took to her like chocolate to milk--he immediately asked her to show him all the things in the room that she could. She had the lights at about 3/4 brightness in the room so that the atmosphere was calm. She had created a special spot on the story rug for him that would allow him to have some space away from the other kids if he needed it during rug time; she had his desk set up at the end of the row, nearest her desk, and away from all but one other child on his left--a child she knew would be relatively easy to get along with. She showed him how he can slide his desk to another spot away from the other kids if he starts to feel upset by them. She showed him his special spot to stand (on the top step, in front of the other kids) when lining up in the morning after recess. He heard every word and it was awesome.
And then we went down to my other son Joey's classroom. Bright florescent lights, echoing walls, and loads of other people. Ben sat in the corner with some blocks for about 5 minutes, and then he began throwing chairs onto their backs, slapping strangers on their bottoms and laughing, spinning the teacher's big desk chair, pushing papers off her desk, blowing and spitting in my face when I tried to hold him--total, complete meltdown. And all my euphoria and hopefulness that we'd make it through this year vanished like dew from a too-warmed lawn.
And then it was today. I made sure Ben got his meds, which sometimes work and sometimes don't, plenty early this morning. I got Ben dressed and made his breakfast--the wrong breakfast, he yelled--and then I made the right breakfast (some battles are not worth fighting--not on the first day of school). He shouldered his backpack and dad drove them to school. And I waited, and waited, and waited... and when the school's number showed up on my caller ID about an hour before the school day ended, my heart sank. False alarm--the principal needed some help with the website. To his knowledge, Ben was doing fine.
My dh Chris (who doesn't work on Thursdays) and I drove over to the school and waited for Ben outside when the final bell rang. He appeared, ran into my arms, and exclaimed, "My teacher is funny and crazy!" We went inside and his teacher confirmed that Ben had a great day.
One down, too many to count to go.
Monday, August 17, 2009
Starting Somewhere
Well, this is where it begins--for this blog, anyway! My son Ben was diagnosed with Autism about a month ago. It was a late diagnosis, really; he's six years old and moving into first grade. We had originally thought he had a serious ADHD problem when every day of preschool included some incident of running out of the classroom into the parking lot or hall, punching another child in the nose, and/or any number of assorted problem behaviors. Unpleasant mothers of other preschool children glared unkindly at me every day, wondering what kind of mother I was to be raising such a terrible child. I wished plagues of locusts upon those "perfect" moms with their "perfect" little children.
Last year, kindergarten, we noticed that Ben couldn't stand to have other kids in his "space." He didn't play with the other children at recess, couldn't tolerate changes to the normal school routine (for example, picture day or an assembly), and continued to exhibit impulsive, destructive behaviors. We started looking at the possibility of an autism spectrum disorder by mid-year, thinking that since Ben had pretty good language skills, he might be facing Asperger's Disorder. By the end of kindergarten, we had gotten the school psychologist involved who completed his testing on the very last day of school, and preliminary results supported our suspicions.
This summer we finally sought out the help of a Child and Adolescent Psychiatrist who, after an extensive clinical interview, told us that Ben met 9 of the 12 DSM-IV criteria for Autism (6 are necessary for the diagnosis). And there it is. Our son is Autistic.
Most people are given this news when their child is two or three years old. The "system" failed us, I guess. Ben missed all his developmental milestones, but our pediatricians just said, "Well, he's a little behind, but some kids just do things at their own pace." The preschool teacher might have suggested that we ask our pediatrician about autism, but state laws prohibited her from saying anything about Ben having a problem of any kind. And I thought Autism meant a child who spends all day quietly rocking, never speaking a word, resisting all human contact.
Turns out, the faces of Autism are as varied as stars in the sky. Some kids lack all language; others face serious social deficits but never seem to stop talking. Some have academic and intellectual problems; others excel in certain areas beyond what any of their peers can do. Ben speaks--constantly--but he isn't necessarily communicating. He lacks an ability to connect with others. He needs routine and order to feel comfortable, and discomfort is manifested as impulsivity.
So here comes first grade. I've been meeting with the "team" at school to get an IEP in place, and the psychiatrist has put Ben on a medication that seems to control his impulsivity. It also has the unfortunate side-effect of putting him to sleep, which obviously won't work in school. And school starts on Thursday. Today is Monday.
This blog is partly for me--to mark progress, remember milestones, and celebrate Ben for the unique person that he is. It is also for you, whoever you are. Maybe you are one of my relatives, and you want to keep track of Ben's progress. Maybe you are a friend and you want to see what's new in our continuing saga. Maybe you don't know me at all, and either have an Autistic child or are just curious about what Autism looks like. Whoever you are, welcome. You keep reading; I'll keep writing, and we'll just take this "adventure" one day at a time.
Last year, kindergarten, we noticed that Ben couldn't stand to have other kids in his "space." He didn't play with the other children at recess, couldn't tolerate changes to the normal school routine (for example, picture day or an assembly), and continued to exhibit impulsive, destructive behaviors. We started looking at the possibility of an autism spectrum disorder by mid-year, thinking that since Ben had pretty good language skills, he might be facing Asperger's Disorder. By the end of kindergarten, we had gotten the school psychologist involved who completed his testing on the very last day of school, and preliminary results supported our suspicions.
This summer we finally sought out the help of a Child and Adolescent Psychiatrist who, after an extensive clinical interview, told us that Ben met 9 of the 12 DSM-IV criteria for Autism (6 are necessary for the diagnosis). And there it is. Our son is Autistic.
Most people are given this news when their child is two or three years old. The "system" failed us, I guess. Ben missed all his developmental milestones, but our pediatricians just said, "Well, he's a little behind, but some kids just do things at their own pace." The preschool teacher might have suggested that we ask our pediatrician about autism, but state laws prohibited her from saying anything about Ben having a problem of any kind. And I thought Autism meant a child who spends all day quietly rocking, never speaking a word, resisting all human contact.
Turns out, the faces of Autism are as varied as stars in the sky. Some kids lack all language; others face serious social deficits but never seem to stop talking. Some have academic and intellectual problems; others excel in certain areas beyond what any of their peers can do. Ben speaks--constantly--but he isn't necessarily communicating. He lacks an ability to connect with others. He needs routine and order to feel comfortable, and discomfort is manifested as impulsivity.
So here comes first grade. I've been meeting with the "team" at school to get an IEP in place, and the psychiatrist has put Ben on a medication that seems to control his impulsivity. It also has the unfortunate side-effect of putting him to sleep, which obviously won't work in school. And school starts on Thursday. Today is Monday.
This blog is partly for me--to mark progress, remember milestones, and celebrate Ben for the unique person that he is. It is also for you, whoever you are. Maybe you are one of my relatives, and you want to keep track of Ben's progress. Maybe you are a friend and you want to see what's new in our continuing saga. Maybe you don't know me at all, and either have an Autistic child or are just curious about what Autism looks like. Whoever you are, welcome. You keep reading; I'll keep writing, and we'll just take this "adventure" one day at a time.
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