The thing with PDD-NOS is that it is easy to forget that my child has a disability. Then he does something and fixates on something so trivial or odd (to me, anyway) that I'm reminded that yes, he sees the world very differently than I do.
This morning we were doing homework before school. This morning's load was more than normal because he was kept home sick the last two days. Don't worry, I didn't overload him, it was just one more page than normal. When it was time to do his reading, he sat on the couch and pouted for five minutes. "I'm not going to school. My head hurts. I'm sick." The thing is, he's probably right, but he's not sick enough to stay home another day. Besides, he'll only be there for 2 1/2 hours before I check him out again for a routine doctor's appointment.
Anywaaaaay, it was time to do his daily reading. A very short book (he's only on a first grade level, so not very difficult). The problem this morning was that the character, a dog, has the name "Biscuit." Yesterday, when he knew he didn't have to go to school, he wasn't so grumpy and just sort of shrugged off the name, although he mentioned that "Biscuit" isn't the name of the dog, it's the name of a food. Can you see where this is going? Yeah, this morning, he couldn't get past the "Biscuit-is-a-food-not-a-dog" issue. I mean, really, he couldn't get past it. So, I couldn't get past it. I put the book down and finished getting him ready for school. Some days he just gets so fixated on a little thing that it gets in the way of the big things, and then we take a break. Does that happen to anyone else?
Showing posts with label PDD-NOS. Show all posts
Showing posts with label PDD-NOS. Show all posts
Wednesday, April 27, 2011
Thursday, February 17, 2011
Teachers and Moms: what they need most
There is a huge difference between a teacher who doesn't have children and a teacher who does.
There is a difference between a teacher who has children and a teacher who has children who have struggled or still do (most parents have at least one) and are still raising them or they haven't been gone from home for too long. There just is. Personally, I prefer the latter, to the nth degree!
I have been a teacher without children. I was a child who did not struggle in school academically. Sure, I was a little socially awkward, but I had friends. I could read social cues. Sure, I had my disciplinary moments, but I never remember crying over homework until I was in at least middle school or high school, and even then, it was minor.
I have a college degree in elementary education. I feel that I got a really good education from a really reputable, good university. I taught for three years, and by the end of the three years, I felt like I was finally starting to get a hang of it all. I was in my element. My abilities to teach the curriculum were improving, and my empathy for my students were growing. It was hard to quit teaching because I felt myself improving and progressing so much, but I didn't realize that I was missing some very important qualities and skills -- the skills that are the difference in a good teacher and an excellent teacher.
Let me be honest and say that no matter how much you've worked with kids, if you are not a parent of one who has struggled, you're missing something in your teaching vision (unless you just have this skill, which I know of some who do). You just are. I speak from experience. I did not know what I lacked until the past two years.
I call it "vision" because until you've lived with it and seen it every day, you don't see what parents see. Try as you might, you don't have that empathy. How do I know? I didn't have it. I wanted to have it. I had sympathy and felt bad, but I still didn't get it. I think back on specific children that I taught that I wish I'd had the vision then. I wish I could feel what the parents were feeling.
J.R. has had some fabulous teachers and therapists, but I can tell you who obviously didn't get it and who did. His current teacher GETS IT. He is safe, secure and loved in her classroom. I feel that he is safe, secure, and loved in her classroom. She listens to me. I don't have to plead my son's case very hard. She's willing to try new things -- anything to help him succeed and feel successful. I feel like we are a team, and this is what moms need most: teammates. Not a boss; not a know-it-all; not a professor, A TEAM.
I never feel like she is the teacher taking control, telling me what works best because she has the degree: because she is the teacher. I KNOW I did that several times. I never hear, "but LeMira . . ." unless it's "but he's doing so well, and I just think the world of him."
For example, in recent weeks, I had been informed of a study* done a few years ago about the effectiveness of exercise balls replacing chairs in classrooms, especially for children with ADD, ADHD, and an ASD (autism spectrum disorder). At the parent/teacher conference last week, I mentioned it to J.R.'s teacher, and asked how she felt about me bringing one in for him. Not even hesitating she responded, "Absolutely. Let's try it." After one day of it, she wanted one for every student in her classroom. J.R. takes the ball with him to math and to his special ed classroom. Mrs. D. has the vision, and I love her for it.
Another teacher at my son's school who gets it is the librarian. She and I hit it off when we discovered that her oldest son struggled with the same things that J.R. has been struggling. Her son is twelve years older, but she has done so much. When I vented to her about homework and trying to figure out something that works, she immediately volunteered her services. For the last week, J.R. and I go to the library after school while she helps him with his homework. He won't fight with her like he does with me (because I'm the mom), and he does better for her. I help her daughter who is the same age as J.R. stay focused and answer her homework questions. It's sort of a trade-off, although I think I'm getting a better deal (I think I need to make her some cookies or take her to lunch. . . hmm. . .). This teacher has the vision.
I thank the Lord that He guided me to put my son in this charter school with teachers who get it. One day, if I ever go back to be a classroom teacher, I know that my vision will be different. I only hope that I will "get it," too.
*Here's a USA Today article written about one example: No Chairs, Students get the "Wiggles Out" on Exercise Balls. (If you want a copy of one of the research papers done on it, I can email it in PDF format to you, just let me know.)
There is a difference between a teacher who has children and a teacher who has children who have struggled or still do (most parents have at least one) and are still raising them or they haven't been gone from home for too long. There just is. Personally, I prefer the latter, to the nth degree!
I have been a teacher without children. I was a child who did not struggle in school academically. Sure, I was a little socially awkward, but I had friends. I could read social cues. Sure, I had my disciplinary moments, but I never remember crying over homework until I was in at least middle school or high school, and even then, it was minor.
I have a college degree in elementary education. I feel that I got a really good education from a really reputable, good university. I taught for three years, and by the end of the three years, I felt like I was finally starting to get a hang of it all. I was in my element. My abilities to teach the curriculum were improving, and my empathy for my students were growing. It was hard to quit teaching because I felt myself improving and progressing so much, but I didn't realize that I was missing some very important qualities and skills -- the skills that are the difference in a good teacher and an excellent teacher.
Let me be honest and say that no matter how much you've worked with kids, if you are not a parent of one who has struggled, you're missing something in your teaching vision (unless you just have this skill, which I know of some who do). You just are. I speak from experience. I did not know what I lacked until the past two years.
I call it "vision" because until you've lived with it and seen it every day, you don't see what parents see. Try as you might, you don't have that empathy. How do I know? I didn't have it. I wanted to have it. I had sympathy and felt bad, but I still didn't get it. I think back on specific children that I taught that I wish I'd had the vision then. I wish I could feel what the parents were feeling.
J.R. has had some fabulous teachers and therapists, but I can tell you who obviously didn't get it and who did. His current teacher GETS IT. He is safe, secure and loved in her classroom. I feel that he is safe, secure, and loved in her classroom. She listens to me. I don't have to plead my son's case very hard. She's willing to try new things -- anything to help him succeed and feel successful. I feel like we are a team, and this is what moms need most: teammates. Not a boss; not a know-it-all; not a professor, A TEAM.
I never feel like she is the teacher taking control, telling me what works best because she has the degree: because she is the teacher. I KNOW I did that several times. I never hear, "but LeMira . . ." unless it's "but he's doing so well, and I just think the world of him."
For example, in recent weeks, I had been informed of a study* done a few years ago about the effectiveness of exercise balls replacing chairs in classrooms, especially for children with ADD, ADHD, and an ASD (autism spectrum disorder). At the parent/teacher conference last week, I mentioned it to J.R.'s teacher, and asked how she felt about me bringing one in for him. Not even hesitating she responded, "Absolutely. Let's try it." After one day of it, she wanted one for every student in her classroom. J.R. takes the ball with him to math and to his special ed classroom. Mrs. D. has the vision, and I love her for it.
Another teacher at my son's school who gets it is the librarian. She and I hit it off when we discovered that her oldest son struggled with the same things that J.R. has been struggling. Her son is twelve years older, but she has done so much. When I vented to her about homework and trying to figure out something that works, she immediately volunteered her services. For the last week, J.R. and I go to the library after school while she helps him with his homework. He won't fight with her like he does with me (because I'm the mom), and he does better for her. I help her daughter who is the same age as J.R. stay focused and answer her homework questions. It's sort of a trade-off, although I think I'm getting a better deal (I think I need to make her some cookies or take her to lunch. . . hmm. . .). This teacher has the vision.
I thank the Lord that He guided me to put my son in this charter school with teachers who get it. One day, if I ever go back to be a classroom teacher, I know that my vision will be different. I only hope that I will "get it," too.
*Here's a USA Today article written about one example: No Chairs, Students get the "Wiggles Out" on Exercise Balls. (If you want a copy of one of the research papers done on it, I can email it in PDF format to you, just let me know.)
Tuesday, January 25, 2011
I Saw The Signs
Post by LeMira
The signs were there from the beginning, but I just assumed they were quirks.
When he was a baby, he never looked at lights. I was a little confused why he was not so memorized with lights like so many other babies. Then, I found out he had cataracts due to being born prematurely. This problem warranted surgery, but I still found it odd that he would stare at his mobile and "yell" and "talk" at it. After he had surgery, he began to notice lights more, but never like others. Instead, he was mesmerized by the fan, but that wasn't so unusual, a lot of babies, if not most, are intrigued by a ceiling fan.
What was odd, though, was that he was mesmerized by all things spinning. He would stare at our stroller and the wheels. If something would spin, he would spin it. If he could spin in it, he would, and he never seemed to get dizzy.
Another quirk was that he began to bang his head or inflict pain on himself by biting his hands. I remember disciplining him and getting upset and trying to teach him not to do those things when he was only nine months old. Sometimes I felt like I was yelling at him trying to get him to stop. I figured the head banging was due to teething pain. It wasn't.
Numbers. Anything with numbers: clocks, CD players, timers, calculators, thermometers, calendars. It has numbers, he's there. This obsession began at age two when we bought him his first CD player. He would blast the volume, but most of all, he would open the lid, spin the disc, and then continuously change the track number. Songs were named not by title or turn, but by track number.
Rocking and/or swinging. When he first came home from the hospital, he loathed the swing. I originally thought it was because the nurses used it all the time to calm him during his stay, however, I now realize that the type of swing I had (a take-along) with all of it's lights, annoying music and fish swinging in the face were too much for him to handle. When he discovered our glider ottoman, he would glide and listen to music for a long time. He used it until it broke when he was five or six. Then he discovered swings. At the park, that's where he would stay the entire time. I've since learned that the rocking/swinging seems to be his stimming, and it is a good way to help him relax and wind down. Too bad his tree swing broke over the holiday break.
Music and buttons. If a toy has music, it's his favorite. He's always responded to music, and he loves to make up his own songs. He's distinguished between beat and rhythm since was at least 18 months old.
Someone, I believe it was Natalie, first mentioned the "a" word (autism) when I mentioned how entranced my son was with spinning things, and she told me that it reminded her of a child she new with autism. I quickly dismissed this as my son definitely loved social contact and people.
When he was tested for preschool, the examiner was a former colleague of mine when I worked as an elementary school teacher. When I told him about some of the "quirky" things that my son did, he mentioned "autistic tendencies." I immediately spouted off why my son did not have autism, and I again dismissed the suggestion.
It was a family trip to Disneyland that I started to get really worried. My husband's dear aunt introduced us to Sensory Processing Disorder and the book the Out of Sync Child. Many of the symptoms seemed to fit my son, but as he progressed to transitional Kindergarten and did not qualify for Occupational Therapy, I knew that there must be more. I wondered about ADD.
That's when Natalie began teaching me about PDD-NOS.
It took me until my son was six years old to get him diagnosed and with services. It really is better to get services started before age five, or so I've heard (I can't give an exact source on this at the moment). However, we were lucky. Since my son was born severely premature, he had all the advantages of therapy from the very beginning. Once he came home, he had speech, vision, and occupational therapy. When he turned three, he was tested for preschool; and when he was five, he moved into transitional kindergarten -- all due to "developmental delay due to prematurity." He's had services from the very beginning. We are lucky for that, for the therapy he's received has helped him more.
Yes, I've had the "what-ifs," but I'm happy that we are where we are. My advice, if you have a question, ask. If you wonder, research. If you have the nagging feeling that something is "off," listen to it. It's okay. It's not your fault. It just is. Parental Instinct, especially Mother's Instinct, is right more often than not. Trust it. Remember a diagnosis doesn't define you, it explains some things, but most importantly, it's meant to get your child and you the help you both need.
My son has come a long way, and so have I. Sometimes it seems like these quirks are too much and too much like road-blocks, but to be honest, they are a huge part of who my son is, and I wouldn't trade him for the world.
The signs were there from the beginning, but I just assumed they were quirks.
When he was a baby, he never looked at lights. I was a little confused why he was not so memorized with lights like so many other babies. Then, I found out he had cataracts due to being born prematurely. This problem warranted surgery, but I still found it odd that he would stare at his mobile and "yell" and "talk" at it. After he had surgery, he began to notice lights more, but never like others. Instead, he was mesmerized by the fan, but that wasn't so unusual, a lot of babies, if not most, are intrigued by a ceiling fan.
What was odd, though, was that he was mesmerized by all things spinning. He would stare at our stroller and the wheels. If something would spin, he would spin it. If he could spin in it, he would, and he never seemed to get dizzy.
Another quirk was that he began to bang his head or inflict pain on himself by biting his hands. I remember disciplining him and getting upset and trying to teach him not to do those things when he was only nine months old. Sometimes I felt like I was yelling at him trying to get him to stop. I figured the head banging was due to teething pain. It wasn't.
Numbers. Anything with numbers: clocks, CD players, timers, calculators, thermometers, calendars. It has numbers, he's there. This obsession began at age two when we bought him his first CD player. He would blast the volume, but most of all, he would open the lid, spin the disc, and then continuously change the track number. Songs were named not by title or turn, but by track number.
Rocking and/or swinging. When he first came home from the hospital, he loathed the swing. I originally thought it was because the nurses used it all the time to calm him during his stay, however, I now realize that the type of swing I had (a take-along) with all of it's lights, annoying music and fish swinging in the face were too much for him to handle. When he discovered our glider ottoman, he would glide and listen to music for a long time. He used it until it broke when he was five or six. Then he discovered swings. At the park, that's where he would stay the entire time. I've since learned that the rocking/swinging seems to be his stimming, and it is a good way to help him relax and wind down. Too bad his tree swing broke over the holiday break.
Music and buttons. If a toy has music, it's his favorite. He's always responded to music, and he loves to make up his own songs. He's distinguished between beat and rhythm since was at least 18 months old.
Someone, I believe it was Natalie, first mentioned the "a" word (autism) when I mentioned how entranced my son was with spinning things, and she told me that it reminded her of a child she new with autism. I quickly dismissed this as my son definitely loved social contact and people.
When he was tested for preschool, the examiner was a former colleague of mine when I worked as an elementary school teacher. When I told him about some of the "quirky" things that my son did, he mentioned "autistic tendencies." I immediately spouted off why my son did not have autism, and I again dismissed the suggestion.
It was a family trip to Disneyland that I started to get really worried. My husband's dear aunt introduced us to Sensory Processing Disorder and the book the Out of Sync Child. Many of the symptoms seemed to fit my son, but as he progressed to transitional Kindergarten and did not qualify for Occupational Therapy, I knew that there must be more. I wondered about ADD.
That's when Natalie began teaching me about PDD-NOS.
It took me until my son was six years old to get him diagnosed and with services. It really is better to get services started before age five, or so I've heard (I can't give an exact source on this at the moment). However, we were lucky. Since my son was born severely premature, he had all the advantages of therapy from the very beginning. Once he came home, he had speech, vision, and occupational therapy. When he turned three, he was tested for preschool; and when he was five, he moved into transitional kindergarten -- all due to "developmental delay due to prematurity." He's had services from the very beginning. We are lucky for that, for the therapy he's received has helped him more.
Yes, I've had the "what-ifs," but I'm happy that we are where we are. My advice, if you have a question, ask. If you wonder, research. If you have the nagging feeling that something is "off," listen to it. It's okay. It's not your fault. It just is. Parental Instinct, especially Mother's Instinct, is right more often than not. Trust it. Remember a diagnosis doesn't define you, it explains some things, but most importantly, it's meant to get your child and you the help you both need.
My son has come a long way, and so have I. Sometimes it seems like these quirks are too much and too much like road-blocks, but to be honest, they are a huge part of who my son is, and I wouldn't trade him for the world.
Thursday, December 30, 2010
Communication Error (by LeMira)
Think of the last conversation you had that made you frustrated. What made you frustrated about that conversation? Were you trying to make a point, teach someone a concept, or give someone instructions? Were they just not getting it? Or did you just feel like the other person wasn't listening? Did you feel like you were talking to a brick wall? Did you get a blank stare in return? When the person did respond, did he make sense?
Communication continually is a problem, a road block. Most of my frustrations are because I feel like I'm being ignored. I lose my temper because I feel like my son responds in slow motion or that I have to repeat myself five times, if not more, to be understood or heeded. I hang my head in shame at the times that I've yelled because he just didn't move fast enough.
It's so easy to get caught up in how something affects me, that my life is being disrupted or put in slow motion, but what about him? I've been thinking about his side of things, and maybe this is how he sees it.
Scenario 1: Imagine you're working on a project. You're so engrossed that you've blocked out the world. Vaguely, you hear background noise, but it isn't related to what you're doing, so you push it out. You're shaken out of your world as you hear your name screamed at you. Your mom says, "I've called you three times, you need to listen when I'm talking to you!" You hang your head in shame and apologize for not hearing her, but you're more frustrated that you were expected to respond when you had no idea you were wanted.
Scenario 2: You climb into the car after school, and you know what mom is going to ask, and so you say, "I had a good day at school today. I had fun." You expect this to deflect her questions because you offered it first. Mom then asks, "What did you learn in math?" Immediately you think of your teacher and the classroom. You think about the worksheet and that your aide helped you with the guided practice. Mom tries to prompt you with questions about adding and subtracting, but you're confused. What is she asking? You might even remember your teacher working problems on the board, but you can't remember what she called it. Your mom asks again, and you realize she needs an answer now. "I don't know," you say. The words are jumbled in your head.
When you try to tell her about recess and what you played, you can't remember the name of the friends you played with or that one thing you did. You can see it in your mind, but you can't remember what it's called. Instead you say, "We had three recesses today."
Homework is a nightmare. You read the words, but you don't know what they mean, and you don't know how to ask what it means. Your mom is reading it to you, but you don't understand that one word. She doesn't explain it the same way the teacher does. In class, you had to use a green crayon, but your homework says to use a yellow crayon; it's not the same. Mom is trying to explain it, but she's going too fast and her voice is getting louder. There are so many problems on the page. It's now 4:15, you'll never get done by 4:30. "I can't do this!" you shout.
As his mom, I'm realizing more and more that I have to slow down, be patient. He is trying, he really is. Some days I'm worn out from saying things five different ways until he understands. I want him to understand me the first time. The more I lose my temper, the more he does. He reacts the way I do based on his observations of me -- because that's the way he learns his social interactions. Some days, I'm looking into a mirror and listening to a recording of myself. It's not pretty.
However, there is hope. He is getting better, and so am I. Instead of rushing him or getting angry when he can't recall a word, I try to prompt him or wait patiently. He gets frustrated easily because he knows he's not fast enough, but I'm learning to give him time and not make him panic. The words are there, and I know how frustrating it is for him to have blank spots for simple words like "car" or "party." These are words he knows, but somehow he blanks out. If I'm always getting angry, he'll never have the confidence that he can do it, and he'll always think that he can't do it or that it's too hard.
As in everything with my son, I have to give him time, and not my timetable, but his. And that is the hardest part for me.
Communication continually is a problem, a road block. Most of my frustrations are because I feel like I'm being ignored. I lose my temper because I feel like my son responds in slow motion or that I have to repeat myself five times, if not more, to be understood or heeded. I hang my head in shame at the times that I've yelled because he just didn't move fast enough.
It's so easy to get caught up in how something affects me, that my life is being disrupted or put in slow motion, but what about him? I've been thinking about his side of things, and maybe this is how he sees it.
Scenario 1: Imagine you're working on a project. You're so engrossed that you've blocked out the world. Vaguely, you hear background noise, but it isn't related to what you're doing, so you push it out. You're shaken out of your world as you hear your name screamed at you. Your mom says, "I've called you three times, you need to listen when I'm talking to you!" You hang your head in shame and apologize for not hearing her, but you're more frustrated that you were expected to respond when you had no idea you were wanted.
Scenario 2: You climb into the car after school, and you know what mom is going to ask, and so you say, "I had a good day at school today. I had fun." You expect this to deflect her questions because you offered it first. Mom then asks, "What did you learn in math?" Immediately you think of your teacher and the classroom. You think about the worksheet and that your aide helped you with the guided practice. Mom tries to prompt you with questions about adding and subtracting, but you're confused. What is she asking? You might even remember your teacher working problems on the board, but you can't remember what she called it. Your mom asks again, and you realize she needs an answer now. "I don't know," you say. The words are jumbled in your head.
When you try to tell her about recess and what you played, you can't remember the name of the friends you played with or that one thing you did. You can see it in your mind, but you can't remember what it's called. Instead you say, "We had three recesses today."
Homework is a nightmare. You read the words, but you don't know what they mean, and you don't know how to ask what it means. Your mom is reading it to you, but you don't understand that one word. She doesn't explain it the same way the teacher does. In class, you had to use a green crayon, but your homework says to use a yellow crayon; it's not the same. Mom is trying to explain it, but she's going too fast and her voice is getting louder. There are so many problems on the page. It's now 4:15, you'll never get done by 4:30. "I can't do this!" you shout.
As his mom, I'm realizing more and more that I have to slow down, be patient. He is trying, he really is. Some days I'm worn out from saying things five different ways until he understands. I want him to understand me the first time. The more I lose my temper, the more he does. He reacts the way I do based on his observations of me -- because that's the way he learns his social interactions. Some days, I'm looking into a mirror and listening to a recording of myself. It's not pretty.
However, there is hope. He is getting better, and so am I. Instead of rushing him or getting angry when he can't recall a word, I try to prompt him or wait patiently. He gets frustrated easily because he knows he's not fast enough, but I'm learning to give him time and not make him panic. The words are there, and I know how frustrating it is for him to have blank spots for simple words like "car" or "party." These are words he knows, but somehow he blanks out. If I'm always getting angry, he'll never have the confidence that he can do it, and he'll always think that he can't do it or that it's too hard.
As in everything with my son, I have to give him time, and not my timetable, but his. And that is the hardest part for me.
Thursday, November 11, 2010
Homework
A Post By LeMira
I decided to keep J.R. in Kindergarten this year due to his social and language delays. So far, I feel very good about it. I also chose to put him in a charter school. Overall, I'm happy with that decision, although there are some major disadvantages there (i.e., the lack of speech therapy that he really needs). The biggest advantages are that he is able to go to first grade for math, and his Kindergarten teacher tries really hard to help him with his math page each day afterward. She really makes an effort to help him out and give him individualized attention. J.R. was doing Kindergarten math, but it was too easy for him. Homework lasted five minutes, which I think isn't bad for Kindergarten; however, he was getting nothing out of it. First Grade math seems to be on his instructional level, which all teachers know is exactly where you want them to be.
(Quick lesson in teacher lingo. There are three basic levels when it comes to a student's learning.
Too Hard= Frustration Level. At this level, you know you need to take a step back. The child is so frustrated and confused that absolutely no learning is happening.
Just Right = Instructional Level. The Instructional Level is the one where the child is learning and it may seem a little hard, but with some practice it becomes easy. Homework and classroom work should be at the instructional level.
Easy= Independent Level. Kids should be reading books at home at the Independent Level. Kids are who being taught too much at this level are bored with school, usually. You find most of your "troublemakers" at school are the ones stuck in the frustration and independent levels.)
Sooo. . . back to J.R. Once he started bringing home First Grade work, there was a huge jump in how long it took him to do homework. We spend at least 30 minutes, four days a week, doing homework. As a teacher, I might think this means it's at a frustration level because a First Grader or Kindergartner should be spending roughly 10-15 minutes a night on homework, not 30. The thing is, as his parent, I know this is just right for him. Why does it take so long? He doesn't understand the instructions or what the problem is asking. It's his language delay. It takes me three to five attempts to explain the problem/instructions just the right way so he will understand. Perhaps one day I will find that "one way," but I don't think I'm catching on.
When I first told J.R.'s teacher about his homework, she was surprised at how long we were spending. . . until I explained why. She understood completely because she experiences the same type of thing with him in class. The biggest difference is that he doesn't fight her. He always fights me. Always. Every day I hear, "I can't do this. It's frustrating." Without fail, I will hear that phrase at least once (if I'm lucky it's only once.) I admit that I'm glad that he chooses to fight me and not his teachers, but some days I can't hold back, and I join the fight; which only makes it worse. The thing is, I know that I get to look forward to this for the next twelve years.
I decided to keep J.R. in Kindergarten this year due to his social and language delays. So far, I feel very good about it. I also chose to put him in a charter school. Overall, I'm happy with that decision, although there are some major disadvantages there (i.e., the lack of speech therapy that he really needs). The biggest advantages are that he is able to go to first grade for math, and his Kindergarten teacher tries really hard to help him with his math page each day afterward. She really makes an effort to help him out and give him individualized attention. J.R. was doing Kindergarten math, but it was too easy for him. Homework lasted five minutes, which I think isn't bad for Kindergarten; however, he was getting nothing out of it. First Grade math seems to be on his instructional level, which all teachers know is exactly where you want them to be.
(Quick lesson in teacher lingo. There are three basic levels when it comes to a student's learning.
Too Hard= Frustration Level. At this level, you know you need to take a step back. The child is so frustrated and confused that absolutely no learning is happening.
Just Right = Instructional Level. The Instructional Level is the one where the child is learning and it may seem a little hard, but with some practice it becomes easy. Homework and classroom work should be at the instructional level.
Easy= Independent Level. Kids should be reading books at home at the Independent Level. Kids are who being taught too much at this level are bored with school, usually. You find most of your "troublemakers" at school are the ones stuck in the frustration and independent levels.)
Sooo. . . back to J.R. Once he started bringing home First Grade work, there was a huge jump in how long it took him to do homework. We spend at least 30 minutes, four days a week, doing homework. As a teacher, I might think this means it's at a frustration level because a First Grader or Kindergartner should be spending roughly 10-15 minutes a night on homework, not 30. The thing is, as his parent, I know this is just right for him. Why does it take so long? He doesn't understand the instructions or what the problem is asking. It's his language delay. It takes me three to five attempts to explain the problem/instructions just the right way so he will understand. Perhaps one day I will find that "one way," but I don't think I'm catching on.
When I first told J.R.'s teacher about his homework, she was surprised at how long we were spending. . . until I explained why. She understood completely because she experiences the same type of thing with him in class. The biggest difference is that he doesn't fight her. He always fights me. Always. Every day I hear, "I can't do this. It's frustrating." Without fail, I will hear that phrase at least once (if I'm lucky it's only once.) I admit that I'm glad that he chooses to fight me and not his teachers, but some days I can't hold back, and I join the fight; which only makes it worse. The thing is, I know that I get to look forward to this for the next twelve years.
Sunday, September 26, 2010
The Results Are In
On Thursday, as I (LeMira) drove home from the appointment with the psychologist, I had many thoughts. Above all, this thought pelted me: Why did I go? Here are the answers I gathered.
1. We have a diagnosis and an explanation. Yes, my child has PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified). It turns out that my son's delays are NOT due to prematurity. In fact, I was told to throw that excuse out. It has NOTHING to do with my son's issue. PDD-NOS is, in fact, hereditary. J.R. would have had it even if he hadn't been premature. I can even tell you that it comes from my husband's line.
2. I was validated. All of the little tactics and ideas I've had that have popped into my head to try were right. Everything I've been doing to try to help my child are just what he's needed. I'm not too involved in my child's life; I'm not a bad mom. My instincts were right, and I was not grasping at straws. To be honest, when I was telling the doctor why I felt my child needed to be tested, he looked at me without expression. (I swear psychologists must have to be able to do that in order to get their degrees.) His expression encouraged me to grasp at everything and anything that I saw in my child that seemed quirky or odd. In the end, he told me that all of my concerns were exactly what PDD-NOS is.
3. I have some strategies that I can use. I can't remember them all, and that's why the psychologist will be writing up a report with recommendations on it of what we can do.
4. I have confidence in my abilities as a mother and knowing my child. Yes, there are days that I feel completely inadequate to be my child's mother, but I now feel some power and confidence in being my child's best advocate.
I can not tell you the relief I felt when the doctor officially gave the diagnosis. I physically felt a burden lift off my shoulders. This is something I can accept, something I can work with. I have answers and now I have a definite direction.
1. We have a diagnosis and an explanation. Yes, my child has PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified). It turns out that my son's delays are NOT due to prematurity. In fact, I was told to throw that excuse out. It has NOTHING to do with my son's issue. PDD-NOS is, in fact, hereditary. J.R. would have had it even if he hadn't been premature. I can even tell you that it comes from my husband's line.
2. I was validated. All of the little tactics and ideas I've had that have popped into my head to try were right. Everything I've been doing to try to help my child are just what he's needed. I'm not too involved in my child's life; I'm not a bad mom. My instincts were right, and I was not grasping at straws. To be honest, when I was telling the doctor why I felt my child needed to be tested, he looked at me without expression. (I swear psychologists must have to be able to do that in order to get their degrees.) His expression encouraged me to grasp at everything and anything that I saw in my child that seemed quirky or odd. In the end, he told me that all of my concerns were exactly what PDD-NOS is.
3. I have some strategies that I can use. I can't remember them all, and that's why the psychologist will be writing up a report with recommendations on it of what we can do.
4. I have confidence in my abilities as a mother and knowing my child. Yes, there are days that I feel completely inadequate to be my child's mother, but I now feel some power and confidence in being my child's best advocate.
I can not tell you the relief I felt when the doctor officially gave the diagnosis. I physically felt a burden lift off my shoulders. This is something I can accept, something I can work with. I have answers and now I have a definite direction.
Thursday, August 26, 2010
Social Skills
Some people are born with an innate sense of social awareness. I have always thought of myself as a people person. I tend to get along with most people and generally like most people. Social situations don't usually scare me, I just go with the flow. So when your child, who shares your genetic make up, has trouble in social situations, it is sometimes hard to understand how they could just not get it.
Most of us are born with the ability to adapt to social situations naturally. For instance, A little boy (Bobby) wants to play with another little boy's (Johnny) toy. The first time, Bobby goes up and takes the toy. Johnny then shoves Bobby and takes the toy back. "Hmm", Bobby thinks, "that didn't work". So he adapts and tries something different. He may not get it right the second or maybe even the third time, but he finally figures out that if he asks or waits his turn then (usually) he will get what he wanted: the toy to play with. This is a social script.
Children with Autism Spectrum Disorder (ASD) have trouble with these social scripts. Since every child is different, the breakdown comes in multiple different places. For my child, it is the deviation from his plan. He thinks he has a solid plan, so why isn't it working? He tries it again and again. His results are always the same, but he still doesn't change his actions unless there is extreme intervention by teaching him the correct social scripts that will give him his desired result. Is this making sense? So something that another child figures out with trial and error, my child needs direct supervision and extreme support to learn. He gets it eventually, and he excels at that specific situation once he figures it out. But, oh dear, here is another situation that is a little different, and we are back to the same sequence all over again. He won't be able to carry over what he learned from the last situation, or if he does, it won't be appropriate to the new situation.
So if we use the same example, Isaac sees a little boy playing with a toy. He wants to play with the toy, but this time he also wants to play with the boy. So he goes to the boy and asks to play with the toy. The boy either says "no" or says "sure" and then walks away. Well, now Isaac is frustrated because he didn't really get what he wanted. So, I have to specifically say, "Did you ask to play WITH the boy?" He couldn't adapt to the change in the situation.
The interesting thing about this process is that every parent goes through this. We have to teach our children these social skills. The unique thing about children with ASD is that Parents have to continue to do this for a much longer period and repetitively. Something a three and four year old should be learning to master, my son still struggles with at six.You could maybe see how this could become tiring for me, teachers, and for Isaac.
As a parent you hope that as you raise your children, that others will understand that it is a learning process for the child and for you as well. I went to the playground for a play date with one of Isaac's classmates from his PDD classroom, and unfortunately, the little girl had a classic "Autism" meltdown. (If you have not seen one of these count yourself lucky, they are intense.) The little girl wanted to swing on a specific swing, and another child was currently using it. She could not change her plan to swing on another unoccupied swing or wait patiently till the other child was off. So she began kicking wood chips at the other child, stomping, screaming, and then eventually hitting her mother when she tried to intervene. She could not be reasoned with, and the tantrum escalated. If you have tried to wrestle an out-of-control six year old you will know how hard it was for this mother.
This sweet mother was, of course, horrified and embarrassed, and it was really interesting for me to watch this as a bystander. Usually I am the mother taking a screaming and kicking child to the car as quickly as possible. The interesting thing was to see how the people around us reacted to such an abnormal meltdown. Most mothers looked on with sympathy and tried to ignore it so this mother wouldn't be embarrassed, but a few looked on horrified or disgustedly. At first I had a desire to say something to these few about how they had no right to judge, but then I thought it's too bad for them that they will never know this sweet mother who is so strong in her fight for her child.
I have become a better person from getting to know other mothers who struggle with their children whether they have special needs or not. Thank you to all of you who have supported and sometimes held me up when I thought I couldn't do it anymore. That, to me, is a social skill that only wisdom and experience can give a person. I hope someday I will have both, and use them to help others.
On a side note, today at the playground Isaac went to someone and asked him what his name was, how old he was, and generally went about the introduction ritual without a flaw! You should have seen my puffed chest and proud face. We've come a long way baby!
Most of us are born with the ability to adapt to social situations naturally. For instance, A little boy (Bobby) wants to play with another little boy's (Johnny) toy. The first time, Bobby goes up and takes the toy. Johnny then shoves Bobby and takes the toy back. "Hmm", Bobby thinks, "that didn't work". So he adapts and tries something different. He may not get it right the second or maybe even the third time, but he finally figures out that if he asks or waits his turn then (usually) he will get what he wanted: the toy to play with. This is a social script.
Children with Autism Spectrum Disorder (ASD) have trouble with these social scripts. Since every child is different, the breakdown comes in multiple different places. For my child, it is the deviation from his plan. He thinks he has a solid plan, so why isn't it working? He tries it again and again. His results are always the same, but he still doesn't change his actions unless there is extreme intervention by teaching him the correct social scripts that will give him his desired result. Is this making sense? So something that another child figures out with trial and error, my child needs direct supervision and extreme support to learn. He gets it eventually, and he excels at that specific situation once he figures it out. But, oh dear, here is another situation that is a little different, and we are back to the same sequence all over again. He won't be able to carry over what he learned from the last situation, or if he does, it won't be appropriate to the new situation.
So if we use the same example, Isaac sees a little boy playing with a toy. He wants to play with the toy, but this time he also wants to play with the boy. So he goes to the boy and asks to play with the toy. The boy either says "no" or says "sure" and then walks away. Well, now Isaac is frustrated because he didn't really get what he wanted. So, I have to specifically say, "Did you ask to play WITH the boy?" He couldn't adapt to the change in the situation.
The interesting thing about this process is that every parent goes through this. We have to teach our children these social skills. The unique thing about children with ASD is that Parents have to continue to do this for a much longer period and repetitively. Something a three and four year old should be learning to master, my son still struggles with at six.You could maybe see how this could become tiring for me, teachers, and for Isaac.
As a parent you hope that as you raise your children, that others will understand that it is a learning process for the child and for you as well. I went to the playground for a play date with one of Isaac's classmates from his PDD classroom, and unfortunately, the little girl had a classic "Autism" meltdown. (If you have not seen one of these count yourself lucky, they are intense.) The little girl wanted to swing on a specific swing, and another child was currently using it. She could not change her plan to swing on another unoccupied swing or wait patiently till the other child was off. So she began kicking wood chips at the other child, stomping, screaming, and then eventually hitting her mother when she tried to intervene. She could not be reasoned with, and the tantrum escalated. If you have tried to wrestle an out-of-control six year old you will know how hard it was for this mother.
This sweet mother was, of course, horrified and embarrassed, and it was really interesting for me to watch this as a bystander. Usually I am the mother taking a screaming and kicking child to the car as quickly as possible. The interesting thing was to see how the people around us reacted to such an abnormal meltdown. Most mothers looked on with sympathy and tried to ignore it so this mother wouldn't be embarrassed, but a few looked on horrified or disgustedly. At first I had a desire to say something to these few about how they had no right to judge, but then I thought it's too bad for them that they will never know this sweet mother who is so strong in her fight for her child.
I have become a better person from getting to know other mothers who struggle with their children whether they have special needs or not. Thank you to all of you who have supported and sometimes held me up when I thought I couldn't do it anymore. That, to me, is a social skill that only wisdom and experience can give a person. I hope someday I will have both, and use them to help others.
On a side note, today at the playground Isaac went to someone and asked him what his name was, how old he was, and generally went about the introduction ritual without a flaw! You should have seen my puffed chest and proud face. We've come a long way baby!
Thursday, August 19, 2010
School is Almost in Session
Last spring, as the end of school approached, I started to dread the summer. For a while, I counted down the days until school. Until today, I thought I was the only one in my household doing that.
The first week of July, I noticed that Jackson started getting very clingy. He watched everywhere I went, asked at least three times if I was going to "wait right there," and panicked if I left the room. This past Sunday as we were getting ready to go to church, he said to me, "Mom, you can't leave Primary [the children's class]." I worried and worried about him. Separation Anxiety at six years old? What was going on?
Yesterday I took him to his new school to meet his teacher. As we climbed into the car, in a timid voice, Jackson stated, "Mom we have 1-2-3-4-5-6-7-8-9-10-11 days until school. I don't want to go to school." It hit me then. How could I have missed this? How could I think my child, the one who remembers dates like I remember how many cookies are left, had forgotten about school? His anxiety about the new school year has been going on since the last day of school in May. He has been worried all summer long.
Suddenly, I'm panicking inside, too. Last year Jackson attended Transitional Kindergarten (also known as Special Kindergarten) - basically Kindergarten at a slower pace. He excelled there. This year I chose to keep him in Kindergarten because of his social skills - or lack thereof. I debated and debated about where to send him to school, and I finally decided on a local charter school. Fewer students=smaller class sizes, right? I found out there are 30 students registered in his Kindergarten class. 30, really? In a Kindergarten class? Yeah, Panic Attack. The school is trying to recruit more students to hire another teacher or encourage some to go to the 3-day class. Jackson needs and is ready for the 5 day/all day Kindergarten.
Over the last few days, I've been fretting and fretting about how he will handle school. Will he be so lost that he hates it everyday? Will he be brave enough to ask what he doesn't know? Will he use the bathroom or have accidents (he has an irrational fear of new toilets)? How many tears will he cry? Will he learn to make friends, or will they shun him? What will he do without me?
There, I said it. I think he needs me. I can't let go. I want to let go, but can't. How do I do this? Jackson needs advanced warning. School registration was chaotic with parents and kids noisily chatting in small, crowded spaces; and so he didn't get a clear idea of the school. I have a few ideas.
The first week of July, I noticed that Jackson started getting very clingy. He watched everywhere I went, asked at least three times if I was going to "wait right there," and panicked if I left the room. This past Sunday as we were getting ready to go to church, he said to me, "Mom, you can't leave Primary [the children's class]." I worried and worried about him. Separation Anxiety at six years old? What was going on?
Yesterday I took him to his new school to meet his teacher. As we climbed into the car, in a timid voice, Jackson stated, "Mom we have 1-2-3-4-5-6-7-8-9-10-11 days until school. I don't want to go to school." It hit me then. How could I have missed this? How could I think my child, the one who remembers dates like I remember how many cookies are left, had forgotten about school? His anxiety about the new school year has been going on since the last day of school in May. He has been worried all summer long.
Suddenly, I'm panicking inside, too. Last year Jackson attended Transitional Kindergarten (also known as Special Kindergarten) - basically Kindergarten at a slower pace. He excelled there. This year I chose to keep him in Kindergarten because of his social skills - or lack thereof. I debated and debated about where to send him to school, and I finally decided on a local charter school. Fewer students=smaller class sizes, right? I found out there are 30 students registered in his Kindergarten class. 30, really? In a Kindergarten class? Yeah, Panic Attack. The school is trying to recruit more students to hire another teacher or encourage some to go to the 3-day class. Jackson needs and is ready for the 5 day/all day Kindergarten.
Over the last few days, I've been fretting and fretting about how he will handle school. Will he be so lost that he hates it everyday? Will he be brave enough to ask what he doesn't know? Will he use the bathroom or have accidents (he has an irrational fear of new toilets)? How many tears will he cry? Will he learn to make friends, or will they shun him? What will he do without me?
There, I said it. I think he needs me. I can't let go. I want to let go, but can't. How do I do this? Jackson needs advanced warning. School registration was chaotic with parents and kids noisily chatting in small, crowded spaces; and so he didn't get a clear idea of the school. I have a few ideas.
- I'm going to call the school next week after it's started for the other grades and ask to take him around the school to see everything.
- Go to the bathroom and flush the toilet; let him practice going by himself.
- Teach him what he needs to do if he has to go to the bathroom, get a drink, etc.
- Remind him to take deep breaths when he's frustrated and perhaps teach him to squeeze the table or his feet if he is frustrated (usually he squeezes my hand hard to get the deep sensory stimulation that he needs).
- Tell him that I love him and that he will be okay, and that it will be fun!
Tuesday, July 27, 2010
Grieving
Hi, all! I'm LeMira, and Natalie asked me to contribute to this blog. So, here is my first post, and you'll get to know more about me and my son as I write more.
Last night I had a talk with a friend who teaches children with special needs at a school just for them. When I learned this, I opened up about my concerns with my six year old son, Jackson. You see, I am getting him tested for PDD-NOS in the next two months. In our conversation last night, my friend Janet mentioned that it's okay to grieve over what you you thought you were going to have but aren't. (Does that make sense?) So many times we associate grief with death or a loss that we could touch, but grief goes deeper. Grief is natural. Grief is okay. Grief is necessary.
Grief is natural. Grief comes with any loss, even if it's the loss of that dream you had, that vision of having children with no special health care needs. Most moms had a time in their lives when they were little girls and dreamed of being a mommy. We held our dolls, sang to them, fed them, and changed their diapers. We played "House" with our siblings and friends - taking turns being the parents and the kids. When we were pregnant, we talked about the dreams we had for our kids. We thought about that first day of school, and what their lives would be like. We had dreams and visions. Those dreams and visions have had to change. Perhaps they can still be, but we will get there via a different path than we had planned, and it hurts. It's normal. We grieve over the other path, the one less rocky (yeah, that one that you see cleeeeeeaaar over there).
Grief is okay. Don't beat yourself up for missing that other path. It doesn't mean that you don't love your kids. It doesn't mean that you aren't grateful for the blessings in your life. It doesn't mean that you would change it, but sometimes it just hurts.
Grief is necessary. The only way to move ahead on this path is to grieve over the path you didn't get first. Let it run its course - shock & denial, guilt&pain, anger & bargaining, depression/reflection/loneliness, the upward turn, reconstruction and working through, acceptance and hope (see this link for more information). Where are you in your stage of grief right now? Think about it. When you first knew that something would be different with your child, how did you feel?
Did you deny it? (I was in denial for much longer than I care to admit.)
Did you blame yourself (guilt/pain)?
Were you angry at the therapist or school teacher who informed you, or did you tell yourself that you could change it if you just did such and such (anger/bargaining)?
Did you fall into depression because you didn't know what to do; did you feel alone, like no one understands or that it's you alone bearing this burden?
Did you find resources to help you?
Are you learning to work through it all?
Have you accepted it?
There is no timeline in grief. It is different for everyone, and it's possible to move through the stages at different rates, in a different order, and repetitively. I can tell you that I've gone through several stages multiple times. For example, I've accepted some things, but I'm still depressed about others. I personally believe that if you don't allow yourself to grieve, and you skip right to acceptance or you get stuck in denial, you will eventually get stuck in depression, and you could possibly go wacko. Tell yourself that your feelings are normal and natural. Then, you will move on when you are ready and start rebuilding your life for the way it can be, not the way you thought it was going to be.
Last night I had a talk with a friend who teaches children with special needs at a school just for them. When I learned this, I opened up about my concerns with my six year old son, Jackson. You see, I am getting him tested for PDD-NOS in the next two months. In our conversation last night, my friend Janet mentioned that it's okay to grieve over what you you thought you were going to have but aren't. (Does that make sense?) So many times we associate grief with death or a loss that we could touch, but grief goes deeper. Grief is natural. Grief is okay. Grief is necessary.
Grief is natural. Grief comes with any loss, even if it's the loss of that dream you had, that vision of having children with no special health care needs. Most moms had a time in their lives when they were little girls and dreamed of being a mommy. We held our dolls, sang to them, fed them, and changed their diapers. We played "House" with our siblings and friends - taking turns being the parents and the kids. When we were pregnant, we talked about the dreams we had for our kids. We thought about that first day of school, and what their lives would be like. We had dreams and visions. Those dreams and visions have had to change. Perhaps they can still be, but we will get there via a different path than we had planned, and it hurts. It's normal. We grieve over the other path, the one less rocky (yeah, that one that you see cleeeeeeaaar over there).
Grief is okay. Don't beat yourself up for missing that other path. It doesn't mean that you don't love your kids. It doesn't mean that you aren't grateful for the blessings in your life. It doesn't mean that you would change it, but sometimes it just hurts.
Grief is necessary. The only way to move ahead on this path is to grieve over the path you didn't get first. Let it run its course - shock & denial, guilt&pain, anger & bargaining, depression/reflection/loneliness, the upward turn, reconstruction and working through, acceptance and hope (see this link for more information). Where are you in your stage of grief right now? Think about it. When you first knew that something would be different with your child, how did you feel?
Did you deny it? (I was in denial for much longer than I care to admit.)
Did you blame yourself (guilt/pain)?
Were you angry at the therapist or school teacher who informed you, or did you tell yourself that you could change it if you just did such and such (anger/bargaining)?
Did you fall into depression because you didn't know what to do; did you feel alone, like no one understands or that it's you alone bearing this burden?
Did you find resources to help you?
Are you learning to work through it all?
Have you accepted it?
There is no timeline in grief. It is different for everyone, and it's possible to move through the stages at different rates, in a different order, and repetitively. I can tell you that I've gone through several stages multiple times. For example, I've accepted some things, but I'm still depressed about others. I personally believe that if you don't allow yourself to grieve, and you skip right to acceptance or you get stuck in denial, you will eventually get stuck in depression, and you could possibly go wacko. Tell yourself that your feelings are normal and natural. Then, you will move on when you are ready and start rebuilding your life for the way it can be, not the way you thought it was going to be.
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