H, my oldest just started 5th grade. He is what we call "twice-exceptional" or "2E." He is exceptional in that he is extremely brilliant and he is exceptional in that he has some type of disability. In his case it is bipolar disorder and ADHD (though he has very little of the "H" - the hyperactive - component and I wonder if his inattention is secondary to feeling like a failure and no one will pay attention to do something at which they know they will fail). Oh yeah, I seem to have forgotten to mention that the apple doesn't fall far from the tree. Unfortunately my son seems to have inherited most of my traits, good and bad.
2E children have a very specific, identifiable pattern of thinking, behaving and feeling. H could be the poster child There are several problems we face when trying to identify 2E children.
- Students who are identified as gifted but also have subtle learning disabilities. For example, a student may use a large vocabulary but have very poor spelling. This category of student tends to perform on grade level.
- Students whose abilities and disabilities mask each other and are thus unidentified. Their superior intelligence, for example, may hide trouble working with numbers. These students often perform at or slightly below their grade level.
- Students identified as both gifted and having learning disabilities. These students stand out in a classroom because they are obviously bright but frustrated with school activities and thus tend to act out. (Job, n.d.)
H is more like #3, though he doesn't act out. His M.O. is to withdrawal.
We began having problems with H when he was 4. He could through award-winning tantrums. Many people would say, "Oh, my kids throw tantrums." No. Not like these. I have two other kids. Most children do not throw tantrums like H does. I often say that he didn't smile for 9 months straight of his 4th year. He was miserable and made everyone else miserable. We all walked on eggshells. I recently reviewed our records and he apparently was hitting, kicking, and spitting at all of us (including his then perhaps 6 month-old brother).* He was spitting at preschool teachers, swiping materials off the desk onto the floor, throwing furniture. He was sneaking LEGO guns into school. He didn't even know what guns were! He called them shooters! We watched nothing but PBS!! He had been fine the year before.
I was having such a hard time with these three kids that I was quite certain H was suffering from "shitty mom syndrome" (SMS). VERY certain. I went everywhere. I enrolled him in several research studies in order to get assessment data since I know how to interpret such information. It said that he was extremely bright, even despite that he wasn't cooperating fully with the researchers. I went to all of the government programs, I went to the school district, they all told me he was perfectly fine. Of course he was - he did fine one-on-one. They often referred me to parenting classes. I'm a psychologist; I could teach parenting classes. It's the implementation that is difficult. We ended up with a therapist coming to the home every week and watching us interact, coaching me, eventually with me wearing an earpiece, getting cues from her in the other room. After about 4 months, she told us she had to close our case because, though she knew we were cooperative and following instructions very well, we weren't making progress and she had to open up the spot for a new family. Awesome. After one such eval, I was fed up. I pulled H back into the room and I asked him to tell the lady how he felt about school. In his sweet little voice he said that he hated school and that he wanted to a bring a bomb to blow up the school so that he wouldn't have to go anymore. She told me that she couldn't help me because he was "just fine" wit her. Sigh. His reason for hating school was that he wanted to be with me which was pure comedy because I was a fucking mess, a screaming, crying lunatic. I actually ended up in a psychiatric hospital (twice) during this time period). I nearly missed his first day of kindergarten. At one point, I submitted an application to Supernanny. We were such a mess on paper that they came to us (we're not in LA but driving distance) and spent a day filming, sort of like a pilot. Wouldn't you know it? Angel children. Perfect angel children. As they left, I asked if they could just come every day. Needless to say, we didn't make the cut. Finally, when he was 4 1/2 someone suggested we go to a psychiatrist. I don't know why that never occurred to me. It's probably because I was still so very sure that his diagnosis was SMS and I knew there was a nothing a psychiatrist could do to fix that.
I was having such a hard time with these three kids that I was quite certain H was suffering from "shitty mom syndrome" (SMS). VERY certain. I went everywhere. I enrolled him in several research studies in order to get assessment data since I know how to interpret such information. It said that he was extremely bright, even despite that he wasn't cooperating fully with the researchers. I went to all of the government programs, I went to the school district, they all told me he was perfectly fine. Of course he was - he did fine one-on-one. They often referred me to parenting classes. I'm a psychologist; I could teach parenting classes. It's the implementation that is difficult. We ended up with a therapist coming to the home every week and watching us interact, coaching me, eventually with me wearing an earpiece, getting cues from her in the other room. After about 4 months, she told us she had to close our case because, though she knew we were cooperative and following instructions very well, we weren't making progress and she had to open up the spot for a new family. Awesome. After one such eval, I was fed up. I pulled H back into the room and I asked him to tell the lady how he felt about school. In his sweet little voice he said that he hated school and that he wanted to a bring a bomb to blow up the school so that he wouldn't have to go anymore. She told me that she couldn't help me because he was "just fine" wit her. Sigh. His reason for hating school was that he wanted to be with me which was pure comedy because I was a fucking mess, a screaming, crying lunatic. I actually ended up in a psychiatric hospital (twice) during this time period). I nearly missed his first day of kindergarten. At one point, I submitted an application to Supernanny. We were such a mess on paper that they came to us (we're not in LA but driving distance) and spent a day filming, sort of like a pilot. Wouldn't you know it? Angel children. Perfect angel children. As they left, I asked if they could just come every day. Needless to say, we didn't make the cut. Finally, when he was 4 1/2 someone suggested we go to a psychiatrist. I don't know why that never occurred to me. It's probably because I was still so very sure that his diagnosis was SMS and I knew there was a nothing a psychiatrist could do to fix that.
So we went. We went to a very reputable doctor who I actually had worked with. He watched H play, he listened to The Perfect Husband and I relay our story. I ended with, "So if you could just tell me that my child is like this because I'm a shitty mom and maybe tell me what sort of things I should do: colder, warmer, more affectionate, less affectionate, angrier, gentler, whatever, we could just checked this little box off as one of, if not the, last box in our quest to figure this out. He told me that he wished he could tell me but that what he saw was bipolar disorder. My child was 4 1/2. I was stunned. I work with the severely mentally ill. This is not good. Images of addiction and suicide flashed through my mind. He recommended medication. We said we weren't ready. He said that that was absolutely fine. He saw H for an hour of play therapy every week or two for four months. I don't know if you know anything about psychiatrists but it is practically unheard of for a psychiatrist to do any actual therapy. They're pretty much: Come in, how're the side effects, feeling suicidal, great...see you in 2-3 months. And I know way more psychiatrists, both personally and professionally, than the average bear. So this guy is great. After about 4 months, H through a huge tantrum. He'd hurt his little sister at the mall. I can't remember exactly how but she was in an empty display cubby at H&M, he wanted it, he hurt her. I had my mom with me as I couldn't handle doing ANYTHING alone. She carried my hysterical daughter, I had my infant son on my back in a carrier, and I had my kicking and screaming 4 year-old over my shoulder like a sack of potatoes. I had to strong-arm him into the car seat while it poured down rain. He kicked and screamed and yelled the entire way home. Once home, everyone got out. I came around to him and by then he was sobbing that he was sorry and that he didn't know why he says those things. Mind you, HE'S FOUR. I asked him if I told him that the doctor has medicine that will make it so that he doesn't feel this way, would he want to take it? He didn't even hesitate, practically begged and shouted, "YES!," as if he'd been waiting for this offer his entire life. So we started meds.
Now, a lot of people have said, "how can you medicate your child? He's so little. He has such a young brain." That's exactly the point. The more times a person has a mood episode (depressive or manic), the more likely it is to recur. The neural pathways develop more strongly for those behaviors and moods and the others fall away a bit. It's called "kindling." It is better to prevent episodes than to wait. Plus, many mood-stabilizers are anti-seizure drugs so they have a lot of research as to the safety of these meds even if they haven't been used as mood-stabilizers in children until more recently.
Things were a bit better with the medication. He went to kindergarten. I was just so fucking relieved to have him out of my hair for a few hours a day that I joke that I pulled up to the curb on the first day, opened the door, gave his ass a shove with my foot and said, "SEE YA IN JUNE!!" If my notes & emails with the teacher are any indication, it appears that's essentially what I did. I checked out. I didn't tell the teacher anything, intentionally, as I wanted her to have fresh eyes. When we walked into his very first parent teacher conference, the teacher looked up, looked down, sighed hugely, hung her head down and shook it, saying his name three times, as in "Well, what have we here - do I have things to tell you?!" Let me just tell you one thing, in case you don't know it. This is not how you want any parent-teacher conference to start, let alone your first. She went on to describe how he took a swing at her when she told him to put a stick down at recess, how he is often in "the quiet chair," and how he is generally, not the model student. We told her what was happening and it made sense to her.
The one more bit of info about kindergarten was that it took him 2 weeks to sign his Valentines. He didn't even have to address them. Just write his name. TWO WEEKS. He could only do 1-3 a night before he melted down. We had nothing to compare it to and thought this was normal. It is not.
At the end of kindergarten, I finally noticed that he was only performing in the average range. A child who is exceptionally bright should be performing in the exceptionally high range. This is how learning disabilities are diagnosed. Imagine an average IQ kid (most are) and they are failing school. That is clearly a learning disability. Something is impeding their ability to perform in way that is consistent with their potential ability (IQ). The same goes for bright kids. They should perform consistent with their potential. H was not. I mentioned this to the psychiatrist. He thought there may be some ADHD (80% of bipolar kids also have ADHD - all of this stuff is not without controversy and as I've mentioned, I actually still think it's probably all SMS). He gave me & my husband a questionnaire to fill out and we had one for the teacher, all to assess behavior. Yes. Significantly inattentive and impulsive, not very hyperactive at all. Let's add a new med.
Well, we didn't want to do that yet. We waited until right before 1st grade started. It was a new school (the boundaries changed, H wasn't attached to anyone at the old school, many of the neighborhood kids of H's age were already at the new school, and I had 2 younger ones coming up - I wanted them to be with their peers). I told the teacher EVERYTHING. She blew me off (she was about 3 years away from retiring). Over the next couple of months, every time she saw me, she told me that H was a good kid. I was so annoyed. I never said he wasn't a good kid. I said he needs some extra help. How is this confusing? I asked the school about special services (read: Special Ed). We had what was apparently an unofficial meeting early on, they told me they'd watch him, and we'd talk in 6 weeks. Eight weeks later, I contacted the resource specialist (the special ed coordinator) and she told me that she spoke to the teacher and everything was fine so if I had problems in the future, I should get back with her. WHAT? Things were not fine. But I'd felt like I'd went to the official people, they shot me down, that was that.
Fast-forward to 2nd grade, AKA the year all hell broke loose. Things are fine for the first few weeks. Then H starts to resist homework. Hours of crying and screaming. When I used to talk about H's tantrums when he was much younger, some moms would say, "Oh, yeah. My kid throws tantrums, too." Not like H's. Now that I have two other kids, I can say this definitively. Your child does not throw tantrums like the ones I'm talking about. If s/he was, you'd be as desperately seeking answers as I am. The same conversations happened over homework. "Oh, my kid throws fits about doing homework." No. Not like mine. You'd be seeking help if s/he were. Within a couple of weeks, H says, "I'm going to run in front of a car so that I will die so that I won't have to do homework and so that I won't have to live with mean parents who make me do homework!" Come now, fellow mommies, tell me that's the kind of thing your child says when s/he has to do homework. I didn't think so.
I literally went, at that moment, to the computer and sent an email OFFICIALLY asking for a special ed eval. They have 60 days to the eval. In the meantime, H isn't really doing any homework.
We go to the meeting. They present their data. He is brilliant, in the 99th percentile of IQ. That means if he is in a typical sample of 100 students, there is only 1 kid who is smarter than he is. The problem was the rest of the data. The rest of the data showed that he was working in the average range. This is a clear clinical indication of a learning disability. CLEAR. But the school was insisting it didn't matter since he was keeping up with grade level.
I know the letter of the law now and I'm much more confident now. I knew that this was a misinterpretation of the law back then but I didn't know how to force them to follow it. The Individuals with Disabilities Education Act (IDEA) says that all US students are entitled to a Free Appropriate Public Education (FAPE). To use a very concrete example, if you have a blind child in a classroom without any accommodations, they are very unlikely to be able to benefit from the education being laid before them (that is an important phrase). This is, therefore, not an appropriate education for that child. This holds true for all students with disabilities. The law also says that the student cannot just be disabled. Their "educational performance" must be "adversely affected because of it. The letter of the law specifically states that passing grades or advancement from grade to grade should not be taken as a guaranteed indication that the student is receiving a FAPE. This is the case in H's situation. But I didn't know how to argue this back then. The case law has clarified that "educational performance" is intentional language. They mean EVERYTHING related to the educational experience, not just "academic performance."
I kept harping on homework. They kept insisting that "homework isn't school, it's home." That statement is asinine. I kept asking, "It's not a problem that my 7 year-old is suicidal over homework?" The school psychologist, repeatedly, as caught on audio recording, said, "That's not our problem" and "That's none of our concern." At a certain point, I asked if he made that identical threat to her on school grounds, if that would be her concern. She replied, "We never qualify a student based on one incident." My husband had to practically physically restrain me from lunging across the table. Being sure to make eye contact with everyone in the room (the resource specialist, the teacher, the principal), I asked, "So we're calling my seven year-old's suicidal bluff? That's what we're doing? I just want to make sure we're all on the same page with this."
Eventually they decided that he just didn't have to do homework since he could clearly get by without it. I said that if all of the other students were required to do homework, he should be assisted to do homework. I said it was comparable to telling a wheelchair bound student of healthy weight that you were not going to build a ramp into the gym since he clearly didn't need PE. We were bulldozed. It didn't matter. This was supposed to be a team. It was not. They blatantly disregarded any outside information or information provided by me or my husband. They never contacted the psychiatrist. They never interviewed H about his mood. They only cared that his teacher said everything was perfectly fine. A little side note about that teacher: One day, I exchanged a couple of emails with the teacher. I asked her to assign an at-home reading book because now we were battling about that. She said she'd have him bring home his library book. I thought, "Fat chance. I've never seen a library book come home." She wrote back 10 minutes later and said she couldn't get him to bring it home and told me to let her know if I wanted her to assign a book (yes, you read that right. She's an idiot). Not two hours later, I was walking through the office common area, I saw the teacher leaning in the school psychologist's doorway which was in the hallway that leads from the office to the campus itself. Very public. The teacher's back was to me, blocking the school psychologist's vision (i.e. neither could see me approaching). As I passed, yelling after my youngest as he dashed ahead (i.e. I was not skulking past), I heard the teacher say, "I mean, what does she want me to do? Come home with him and read with him myself for her?" Keep in mind that there is no love lost between me & the school psychologist so the teacher knows that this woman is a great place to badmouth me. I was stunned by the idiocy and unprofessionalism. I wish I'd stopped and said, "Why, yes!!! I'd LOVE that. I didn't realize that was an option!!"
Anyway, over the next couple of years, we had a couple more evaluations to assess more specific areas (speech, writing, reading). His third grade teacher was a gift from the universe. When we met in the beginning of the year, we met and I gave her the history. She said, "Why does he not have an IEP?" (An IEP is an individualized educational plan that is developed for every student who receives special education). I said, "Good question. Apparently they want him to suffer more and fail more." She said, "That's craziness. They won't prevent problems? They only want to try to clean them up? Insanity." Me, "Exactly." That year, she kept him after school and did homework with him, as in side-by-side, actually doing the work with him, every day for 15-30 minutes. She also transcribed as much of his work as she could. I would say that at least 50% of the work that came home was written in her hand. Of the remaining 50%, I'd say that perhaps 10% was done. He hates to write. Anything. Math, sentences, whatever. If you write the answers you have half a chance at getting him to participate. So this teacher did that. She had perhaps 26 other students that she was teaching. An angel.
Fourth grade. The teacher is not approachable. She has heard from the 3rd grade teacher and thinks she understands H because her kid has been diagnosed with an anxiety disorder. It became very clear, very quick, that she was having problems with H, probably because he wasn't like her mentally ill child, so therefore he was not mentally ill, just a behavior problem. I asked to volunteer in class. She said that there were no opportunities on the days I was available. In hindsight, I would've asked to come in and sit in the back of the room and pretend to assemble packets or something.
A month or so in, she comes out at pick-up in a panic. She tells me that I absolutely have to get him a private math tutor "or he'll never make it this year." When I told my husband, he asked if I got it on tape, lol. He said, "That sounds remarkably close to them not being able to provide him with an adequate education." From then on, his only homework was to work on his times tables for 20 minutes. P.S. He did an app called Medieval Math (which is amazing, btw) for 20 minutes for months. He is still no closer to knowing his times tables than when he starts. HE'S FUCKING DISABLED. (Side note: We've had 3 tutors. The first two said they didn't want to work with H if he didn't want to be worked with. The third had serious boundary problems, wanted to work for free, go and aide in his classroom for free for two mornings a week, unpaid, come and do homework with him every night at our house. It just felt really off).
She rarely sends home anything, almost never sends even a group email, never sent an individual email, and almost never responds to emails. I only got a couple of tests that were barely completed and very wrong. In March, I think, I finally emailed and said that I haven't gotten anything, is H not bringing it home, is she not sending stuff home? She responded that he wasn't bringing anything home because he wasn't doing anything. WHAT?????
Now, a lot of people have said, "how can you medicate your child? He's so little. He has such a young brain." That's exactly the point. The more times a person has a mood episode (depressive or manic), the more likely it is to recur. The neural pathways develop more strongly for those behaviors and moods and the others fall away a bit. It's called "kindling." It is better to prevent episodes than to wait. Plus, many mood-stabilizers are anti-seizure drugs so they have a lot of research as to the safety of these meds even if they haven't been used as mood-stabilizers in children until more recently.
Things were a bit better with the medication. He went to kindergarten. I was just so fucking relieved to have him out of my hair for a few hours a day that I joke that I pulled up to the curb on the first day, opened the door, gave his ass a shove with my foot and said, "SEE YA IN JUNE!!" If my notes & emails with the teacher are any indication, it appears that's essentially what I did. I checked out. I didn't tell the teacher anything, intentionally, as I wanted her to have fresh eyes. When we walked into his very first parent teacher conference, the teacher looked up, looked down, sighed hugely, hung her head down and shook it, saying his name three times, as in "Well, what have we here - do I have things to tell you?!" Let me just tell you one thing, in case you don't know it. This is not how you want any parent-teacher conference to start, let alone your first. She went on to describe how he took a swing at her when she told him to put a stick down at recess, how he is often in "the quiet chair," and how he is generally, not the model student. We told her what was happening and it made sense to her.
The one more bit of info about kindergarten was that it took him 2 weeks to sign his Valentines. He didn't even have to address them. Just write his name. TWO WEEKS. He could only do 1-3 a night before he melted down. We had nothing to compare it to and thought this was normal. It is not.
At the end of kindergarten, I finally noticed that he was only performing in the average range. A child who is exceptionally bright should be performing in the exceptionally high range. This is how learning disabilities are diagnosed. Imagine an average IQ kid (most are) and they are failing school. That is clearly a learning disability. Something is impeding their ability to perform in way that is consistent with their potential ability (IQ). The same goes for bright kids. They should perform consistent with their potential. H was not. I mentioned this to the psychiatrist. He thought there may be some ADHD (80% of bipolar kids also have ADHD - all of this stuff is not without controversy and as I've mentioned, I actually still think it's probably all SMS). He gave me & my husband a questionnaire to fill out and we had one for the teacher, all to assess behavior. Yes. Significantly inattentive and impulsive, not very hyperactive at all. Let's add a new med.
Well, we didn't want to do that yet. We waited until right before 1st grade started. It was a new school (the boundaries changed, H wasn't attached to anyone at the old school, many of the neighborhood kids of H's age were already at the new school, and I had 2 younger ones coming up - I wanted them to be with their peers). I told the teacher EVERYTHING. She blew me off (she was about 3 years away from retiring). Over the next couple of months, every time she saw me, she told me that H was a good kid. I was so annoyed. I never said he wasn't a good kid. I said he needs some extra help. How is this confusing? I asked the school about special services (read: Special Ed). We had what was apparently an unofficial meeting early on, they told me they'd watch him, and we'd talk in 6 weeks. Eight weeks later, I contacted the resource specialist (the special ed coordinator) and she told me that she spoke to the teacher and everything was fine so if I had problems in the future, I should get back with her. WHAT? Things were not fine. But I'd felt like I'd went to the official people, they shot me down, that was that.
Fast-forward to 2nd grade, AKA the year all hell broke loose. Things are fine for the first few weeks. Then H starts to resist homework. Hours of crying and screaming. When I used to talk about H's tantrums when he was much younger, some moms would say, "Oh, yeah. My kid throws tantrums, too." Not like H's. Now that I have two other kids, I can say this definitively. Your child does not throw tantrums like the ones I'm talking about. If s/he was, you'd be as desperately seeking answers as I am. The same conversations happened over homework. "Oh, my kid throws fits about doing homework." No. Not like mine. You'd be seeking help if s/he were. Within a couple of weeks, H says, "I'm going to run in front of a car so that I will die so that I won't have to do homework and so that I won't have to live with mean parents who make me do homework!" Come now, fellow mommies, tell me that's the kind of thing your child says when s/he has to do homework. I didn't think so.
I literally went, at that moment, to the computer and sent an email OFFICIALLY asking for a special ed eval. They have 60 days to the eval. In the meantime, H isn't really doing any homework.
We go to the meeting. They present their data. He is brilliant, in the 99th percentile of IQ. That means if he is in a typical sample of 100 students, there is only 1 kid who is smarter than he is. The problem was the rest of the data. The rest of the data showed that he was working in the average range. This is a clear clinical indication of a learning disability. CLEAR. But the school was insisting it didn't matter since he was keeping up with grade level.
I know the letter of the law now and I'm much more confident now. I knew that this was a misinterpretation of the law back then but I didn't know how to force them to follow it. The Individuals with Disabilities Education Act (IDEA) says that all US students are entitled to a Free Appropriate Public Education (FAPE). To use a very concrete example, if you have a blind child in a classroom without any accommodations, they are very unlikely to be able to benefit from the education being laid before them (that is an important phrase). This is, therefore, not an appropriate education for that child. This holds true for all students with disabilities. The law also says that the student cannot just be disabled. Their "educational performance" must be "adversely affected because of it. The letter of the law specifically states that passing grades or advancement from grade to grade should not be taken as a guaranteed indication that the student is receiving a FAPE. This is the case in H's situation. But I didn't know how to argue this back then. The case law has clarified that "educational performance" is intentional language. They mean EVERYTHING related to the educational experience, not just "academic performance."
I kept harping on homework. They kept insisting that "homework isn't school, it's home." That statement is asinine. I kept asking, "It's not a problem that my 7 year-old is suicidal over homework?" The school psychologist, repeatedly, as caught on audio recording, said, "That's not our problem" and "That's none of our concern." At a certain point, I asked if he made that identical threat to her on school grounds, if that would be her concern. She replied, "We never qualify a student based on one incident." My husband had to practically physically restrain me from lunging across the table. Being sure to make eye contact with everyone in the room (the resource specialist, the teacher, the principal), I asked, "So we're calling my seven year-old's suicidal bluff? That's what we're doing? I just want to make sure we're all on the same page with this."
Eventually they decided that he just didn't have to do homework since he could clearly get by without it. I said that if all of the other students were required to do homework, he should be assisted to do homework. I said it was comparable to telling a wheelchair bound student of healthy weight that you were not going to build a ramp into the gym since he clearly didn't need PE. We were bulldozed. It didn't matter. This was supposed to be a team. It was not. They blatantly disregarded any outside information or information provided by me or my husband. They never contacted the psychiatrist. They never interviewed H about his mood. They only cared that his teacher said everything was perfectly fine. A little side note about that teacher: One day, I exchanged a couple of emails with the teacher. I asked her to assign an at-home reading book because now we were battling about that. She said she'd have him bring home his library book. I thought, "Fat chance. I've never seen a library book come home." She wrote back 10 minutes later and said she couldn't get him to bring it home and told me to let her know if I wanted her to assign a book (yes, you read that right. She's an idiot). Not two hours later, I was walking through the office common area, I saw the teacher leaning in the school psychologist's doorway which was in the hallway that leads from the office to the campus itself. Very public. The teacher's back was to me, blocking the school psychologist's vision (i.e. neither could see me approaching). As I passed, yelling after my youngest as he dashed ahead (i.e. I was not skulking past), I heard the teacher say, "I mean, what does she want me to do? Come home with him and read with him myself for her?" Keep in mind that there is no love lost between me & the school psychologist so the teacher knows that this woman is a great place to badmouth me. I was stunned by the idiocy and unprofessionalism. I wish I'd stopped and said, "Why, yes!!! I'd LOVE that. I didn't realize that was an option!!"
Anyway, over the next couple of years, we had a couple more evaluations to assess more specific areas (speech, writing, reading). His third grade teacher was a gift from the universe. When we met in the beginning of the year, we met and I gave her the history. She said, "Why does he not have an IEP?" (An IEP is an individualized educational plan that is developed for every student who receives special education). I said, "Good question. Apparently they want him to suffer more and fail more." She said, "That's craziness. They won't prevent problems? They only want to try to clean them up? Insanity." Me, "Exactly." That year, she kept him after school and did homework with him, as in side-by-side, actually doing the work with him, every day for 15-30 minutes. She also transcribed as much of his work as she could. I would say that at least 50% of the work that came home was written in her hand. Of the remaining 50%, I'd say that perhaps 10% was done. He hates to write. Anything. Math, sentences, whatever. If you write the answers you have half a chance at getting him to participate. So this teacher did that. She had perhaps 26 other students that she was teaching. An angel.
Fourth grade. The teacher is not approachable. She has heard from the 3rd grade teacher and thinks she understands H because her kid has been diagnosed with an anxiety disorder. It became very clear, very quick, that she was having problems with H, probably because he wasn't like her mentally ill child, so therefore he was not mentally ill, just a behavior problem. I asked to volunteer in class. She said that there were no opportunities on the days I was available. In hindsight, I would've asked to come in and sit in the back of the room and pretend to assemble packets or something.
A month or so in, she comes out at pick-up in a panic. She tells me that I absolutely have to get him a private math tutor "or he'll never make it this year." When I told my husband, he asked if I got it on tape, lol. He said, "That sounds remarkably close to them not being able to provide him with an adequate education." From then on, his only homework was to work on his times tables for 20 minutes. P.S. He did an app called Medieval Math (which is amazing, btw) for 20 minutes for months. He is still no closer to knowing his times tables than when he starts. HE'S FUCKING DISABLED. (Side note: We've had 3 tutors. The first two said they didn't want to work with H if he didn't want to be worked with. The third had serious boundary problems, wanted to work for free, go and aide in his classroom for free for two mornings a week, unpaid, come and do homework with him every night at our house. It just felt really off).
She rarely sends home anything, almost never sends even a group email, never sent an individual email, and almost never responds to emails. I only got a couple of tests that were barely completed and very wrong. In March, I think, I finally emailed and said that I haven't gotten anything, is H not bringing it home, is she not sending stuff home? She responded that he wasn't bringing anything home because he wasn't doing anything. WHAT?????
In the meantime, H is crying to me all the time about how he
is the most stupid kid in the world, how everyone knows it, how he is so
embarrassed that he is always the last one to finish anything. He says he
hates being different and stupid. It's heartbreaking.
They make him start doing real homework again (which he learned from a goody-two-shoes policing peer when she tattled that he wasn't turning homework in and the teacher said that he should be). He was in tears each night about how he was going to be in trouble for not finishing it. I told him that I wasn't going to make him do it all. We would work for 20 minutes and then I'd send a note. In those 20 minutes, by the way, he could do about 3 math problems (e.g. 153 x 17 = ). One night the teacher sent home a note (written directly on an outline that the students would be using for weeks - read: permanently in his face and withing sight of his neighbors) that said: "The students had an hour to work on this and H didn't finish (in actuality, he didn't even start it)." I sent a note that said he worked for 90 minutes and still didn't finish and that he was terrified that he would be in trouble. I got a note back that said, "H is a very bright child. I know he can do it. He just needs to try harder. We had a talk about making better use of class time." Riddle me this: You have a brilliant child sitting in a classroom who is doing absolutely nothing and you KNOW he's disabled (that has never been up for debate). Who is wasting who's class time?
I then sent an email in which I wrote, verbatim: He has told me that he doesn't understand "anything" that's going on at school. He said that when he looks at a math worksheet, "all I see are random numbers - I have no idea what I'm supposed to do with them so I just gave up." It is obvious that he has given up. However I think it is very clear that his giving up is due to his disabilities, and he has many of them - bipolar disorder, ADHD, and though the IEP team wouldn't qualify him for services based on the fact that he was passing, he met criteria in 2nd grade for specific learning disabilities (according to the IDEA criteria). Asking H to try harder is akin to asking a deaf child to listen harder. We are not communicating in a language that he is capable of understanding. The worst thing one could tell a kid like H is that he needs to try harder. He is trying the very hardest he can and not only is he failing at the task, he's being told that it's because he's not trying his hardest and he has no idea about how he could possibly try harder. We need to try harder. He has shown that he is incapable of adapting to our expectations as he has yet to do so in the years we've been trying. We need to adapt to his.
I requested a re-eval. The teacher asked me to call her one evening. She proceeds to say, repeatedly, that this is off-the-record, she's on her personal phone, personal time, at home. She said she thinks H needs 1:1 instruction. She thinks he can return to the classroom for discussion because he likes that but that, even then, he needs an aide to keep him on task. It was a 45 minute discussion and she repeated that information numerous times. She also said that she wasn't allowed to say this in the meeting. This is absolutely untrue and this is something else that needs to be told about the educational system. Teachers are very strongly discouraged (read: intimidated) from "siding with the family." There are laws on the books that protect teachers from retaliation by school administration in situations where the teacher (or any school staff member) has provided information that supports the family's case. Why, pray tell, would there need to be such a law on the books if it doesn't happen, with frequency? It's shady and wrong and disgusting.
They did all the assessing and we went to our meeting. H's scores had sunk shockingly dramatically in almost all areas, including IQ, which is not supposed to happen. In the meeting, one of his teachers (a long-term sub who I think was less aware of the "don't support the family" unofficial policy) said that she thinks he only does about 10% of his independent work. SO YOU'RE SAYING YOU'VE BEEN BABYSITTING MY CHILD ALL YEAR?? She said that he is unable to go for more than a minute or two without needing to be prompted to get to work.
At the end of the meeting, they qualified him for special ed. We were shocked. His his scores on all of the academic measures were still within the average range, statistically. He had the same amount of discrepancy.** The only thing different was that the teachers were telling a different tale than the 2nd grade teacher did. This is infuriating because they refer to this whole thing as a meeting of an Individualized Education Plan team meeting. You know, the kind of team where some people's input matters and other people's is discarded out of hand. Anyway, they offered him 4 hours of pull-out instruction and 1/2 hour a week of counseling (which amounts to 10% of his school time). This is borderline insulting. How in the world do they think they can make up for 90% of his work (that he's not doing, according to the teacher) in just 10% of his time? And for a child who is living with a severe mental illness, one that largely drives his difficulties in school, 1/2 hour a week of counseling is pathetic. I've worked in prison and we give our prisoners better than this. We said we had to think about it.
This summer we met with a lawyer to figure out what to do. She is apparently the best, the only one anyone will recommend for our district. She looked at our case and said that it was unwinnable. Not because he doesn't need more but because he's keeping his head above water. Furthermore, she said she can't think of an appropriate placement for him. There are non-public schools (NPS) that have both private pay students and public school students who were sent there because the public school could not provide them with a FAPE in-house. I looked up the statistics. Based on my son's young age, his two diagnoses, and his IQ, only 0.0064% of the under 18 population have his same stats. That's not even accounting for the extreme variability with any population with a particular diagnosis. The problem is that no one knows what to do with my kid because no one has seen anyone remotely like my kid and they are very unlikely to ever see someone like him again. She said she doesn't even want to take our money (what? I'll take "things I never thought I'd hear a lawyer say for $200, Alex") because it would be a waste.
She suggested we do a trial at an NPS. We did. At the end of the 2 day trial, they said they wouldn't accept him because he needed too much 1:1 attention. Let me lay that out for you. My child is not needy enough to receive real services in the public school but too needy to be appropriate for an NPS. I explained how my son felt about his trial. He said he finished a worksheet "for the first time in my life." He said that he had fun. At school??? He liked the kids. The headmaster agreed to let him stick around for the rest of the summer, a total of 7 days. At the end, the headmaster said they'd accept him. I think it is a clear case of H feeling comfortable enough in the environment to be willing to go it alone a bit. I asked H how he felt about the school. He said that the teachers didn't get mad at him so much. He said that he didn't feel stupid there. He said that he felt like the other kids are more like he is. He said that he liked how there were only 5 kids because "I know help will come around to me more frequently." That last statement makes me think that he's just waiting for an adult to sit with him to make sure he doesn't do anything incorrectly, almost like he doesn't want to work without a net.
We had to decide if we wanted to try to sell a body part to send him there ourselves or return to public school, let him drown some more, and hope that it will be severe enough that the district will send him to the NPS. The lawyer said that if we sent him there ourselves, we'd have a very hard time every proving that the public school was incapable of providing him with a FAPE. So we're sending him back to public school. It's horrible to put any kid on this yo-yo, trying to get him to be open enough to consider the FAPE yet make sure he knows it might not happen. It's heart-wrenching to do this to a kid who explodes when he faces the unknown.
At this point, my kid is operating on blind faith that I (and, less so, my husband, simply because my husband doesn't struggle with the same issues as my kid and I do) am trying my hardest to do the best for him, that we believe in him and love him unconditionally, that we will never let him down. It is an almost unbearable burden. I can see him leaning on me in this way. Blind faith. It's crushing.
We just started school and the former special ed teacher (who would've done the pull-out instruction) is now a 5th grade teacher, my son's 5th grade teacher. H loves her. One of a few things may happen. He may get worse because he will feel entitled to her full attention, which he obviously won't get. Or he she may give him more attention than a typical teacher would and it would serve as a bit of a bandaid (there is no way it will bring him to any acceptable level by any other standard than the district's). If she holds him together that means his will end up falling apart in middle school and as time ticks by, based on the literature, it gets harder and harder to pull these kids together.
I can't handle this. I don't understand how anyone could. I suppose many don't have to, only parents who are kids who live with other rare combinations of characteristics. All in all, we're probably one of less than 0.1% of families with students in school who ever know anything like this. Lucky everyone else. :-(
They did all the assessing and we went to our meeting. H's scores had sunk shockingly dramatically in almost all areas, including IQ, which is not supposed to happen. In the meeting, one of his teachers (a long-term sub who I think was less aware of the "don't support the family" unofficial policy) said that she thinks he only does about 10% of his independent work. SO YOU'RE SAYING YOU'VE BEEN BABYSITTING MY CHILD ALL YEAR?? She said that he is unable to go for more than a minute or two without needing to be prompted to get to work.
At the end of the meeting, they qualified him for special ed. We were shocked. His his scores on all of the academic measures were still within the average range, statistically. He had the same amount of discrepancy.** The only thing different was that the teachers were telling a different tale than the 2nd grade teacher did. This is infuriating because they refer to this whole thing as a meeting of an Individualized Education Plan team meeting. You know, the kind of team where some people's input matters and other people's is discarded out of hand. Anyway, they offered him 4 hours of pull-out instruction and 1/2 hour a week of counseling (which amounts to 10% of his school time). This is borderline insulting. How in the world do they think they can make up for 90% of his work (that he's not doing, according to the teacher) in just 10% of his time? And for a child who is living with a severe mental illness, one that largely drives his difficulties in school, 1/2 hour a week of counseling is pathetic. I've worked in prison and we give our prisoners better than this. We said we had to think about it.
This summer we met with a lawyer to figure out what to do. She is apparently the best, the only one anyone will recommend for our district. She looked at our case and said that it was unwinnable. Not because he doesn't need more but because he's keeping his head above water. Furthermore, she said she can't think of an appropriate placement for him. There are non-public schools (NPS) that have both private pay students and public school students who were sent there because the public school could not provide them with a FAPE in-house. I looked up the statistics. Based on my son's young age, his two diagnoses, and his IQ, only 0.0064% of the under 18 population have his same stats. That's not even accounting for the extreme variability with any population with a particular diagnosis. The problem is that no one knows what to do with my kid because no one has seen anyone remotely like my kid and they are very unlikely to ever see someone like him again. She said she doesn't even want to take our money (what? I'll take "things I never thought I'd hear a lawyer say for $200, Alex") because it would be a waste.
She suggested we do a trial at an NPS. We did. At the end of the 2 day trial, they said they wouldn't accept him because he needed too much 1:1 attention. Let me lay that out for you. My child is not needy enough to receive real services in the public school but too needy to be appropriate for an NPS. I explained how my son felt about his trial. He said he finished a worksheet "for the first time in my life." He said that he had fun. At school??? He liked the kids. The headmaster agreed to let him stick around for the rest of the summer, a total of 7 days. At the end, the headmaster said they'd accept him. I think it is a clear case of H feeling comfortable enough in the environment to be willing to go it alone a bit. I asked H how he felt about the school. He said that the teachers didn't get mad at him so much. He said that he didn't feel stupid there. He said that he felt like the other kids are more like he is. He said that he liked how there were only 5 kids because "I know help will come around to me more frequently." That last statement makes me think that he's just waiting for an adult to sit with him to make sure he doesn't do anything incorrectly, almost like he doesn't want to work without a net.
We had to decide if we wanted to try to sell a body part to send him there ourselves or return to public school, let him drown some more, and hope that it will be severe enough that the district will send him to the NPS. The lawyer said that if we sent him there ourselves, we'd have a very hard time every proving that the public school was incapable of providing him with a FAPE. So we're sending him back to public school. It's horrible to put any kid on this yo-yo, trying to get him to be open enough to consider the FAPE yet make sure he knows it might not happen. It's heart-wrenching to do this to a kid who explodes when he faces the unknown.
At this point, my kid is operating on blind faith that I (and, less so, my husband, simply because my husband doesn't struggle with the same issues as my kid and I do) am trying my hardest to do the best for him, that we believe in him and love him unconditionally, that we will never let him down. It is an almost unbearable burden. I can see him leaning on me in this way. Blind faith. It's crushing.
We just started school and the former special ed teacher (who would've done the pull-out instruction) is now a 5th grade teacher, my son's 5th grade teacher. H loves her. One of a few things may happen. He may get worse because he will feel entitled to her full attention, which he obviously won't get. Or he she may give him more attention than a typical teacher would and it would serve as a bit of a bandaid (there is no way it will bring him to any acceptable level by any other standard than the district's). If she holds him together that means his will end up falling apart in middle school and as time ticks by, based on the literature, it gets harder and harder to pull these kids together.
I can't handle this. I don't understand how anyone could. I suppose many don't have to, only parents who are kids who live with other rare combinations of characteristics. All in all, we're probably one of less than 0.1% of families with students in school who ever know anything like this. Lucky everyone else. :-(
* A bit of background info... H was 3 1/2 when S was born. C was 21 months at the time. I had three children under 4, two of who were cloth-diapered. It is fantastically fun! That is, if you enjoy losing your mother-fucking mind. H began to fall apart after S was born. It was odd because he never even seemed to notice C had joined the party until S did.
** A learning disability is diagnosed, clinically, when someone's performance is not on par with their potential. For example, most people have a potential (as measured by an IQ test) of 100 (a perfectly average IQ score). If they are scoring more than 22.5 points below that on a test of academic skills (or are earning significantly lower than average grades), there's a problem. Everyone should perform to the best of their ability and when someone isn't there is some type of impediment (aka disability) in the way. I suppose it can be any type of disability, like bipolar disorder, but the end result is a learning disability. The person isn't learning commensurate with their potential. The problem for 2e people is that their potential is higher than average (my son's IQ measured 139). If they are performing below their potential, they are still performing in the average range. But that doesn't mean there isn't a disability present. It just means that the schools, more so in some states than others, try to shirk their responsibility to educate ALL students who are not getting an adequate education - and adequate education means one that is appropriate for each student as an individual.
References
Job, J. (n.d.) Understanding twice-exceptional students. Retrieved from http://www.learnnc.org/lp/pages/6960
Nielsen, M.E. (1994) Characteristics of Twice-Exceptional Children. Retrieved from http://www.csi.state.co.us/UserFiles/Servers/Server_2345071/File/Characteristics%20of%20Twice-Exceptional%20Children.pdf.
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