Even before we started receiving in-home services for Samuel, I have always wanted to "work" with Samuel at home. Whether it was getting him to be able to play games with the family, helping with chores, or reading together, a lot of time and energy has been invested by our family to teach these things to Samuel. Thanks to having in-home services, Samuel is well on his way to participating in "normal" family events.
My first step in teaching him to "work" was to follow the recommendation of his special education teacher during the summer break after his first year at school. We set aside an area in the playroom and did little drills and took data! We did things like laying out 3 cards and he had to "select different." After that summer I did not take data, but when I worked with Samuel I started fitting in other activities like working on a puzzle.
In-home services started for Samuel almost 2 years ago. Homework wasn't put into his schedule right away, but was added after he demonstrated that he could comply with other activities. Spelling homework has been around for him since kindergarten. Last school year I requested some math worksheets and copies of his reading stories (they wouldn't let me have a copy of the textbook). This year we have spelling, the school has allowed me to have a copy of the reading textbook (yay!), they send home some reading worksheets, and I make up homework for Social Studies and Science based on the school work I see him bring home and on the "Standards of Learning" lists I have for each school quarter.
If I put together work for 3 subjects I would say that there is about 5-10 minutes of work for Samuel to do. I use edible reinforcers during the homework session and I make sure a highly reinforcing activity follows the homework session. We do his homework in my bedroom, sitting on the floor with a lap desk. The in-home services provider does most of his homework at the kitchen table, but sometimes they will read in the living room. Other staff members might work with him in a quieter area of the house if Samuel is too distracted in the kitchen.
At the beginning of this school year it could take an hour for Samuel to comply. If he did not comply I told him he had to go take a break until he was ready. Most of the hour it would take involved him going back and forth taking breaks and returning to my room. I learned the hard way that I cannot say anything like "this is your last chance to ______..." He has a meltdown if I do that. What works better is to ask him "Are you ready to work?" or say something like "You know, the sooner you do your work the sooner you get to do what you really want to do!" Now he almost never has to leave my room. All I have to say is "If you are not ready to work then you should probably take a break." This is enough to prompt him to say "I'm ready." On a good night he gets through his work in about 10-15 minutes.
Tuesday, February 27, 2007
Late Night
I was a little tired and running behind this afternoon, which just snowballed all evening so that I did not get the boys to bed until 10pm!
Samuel got his hair cut this afternoon. I took all 4 children in, and a family with 3 boys was before us! I was worried about Samuel waiting patiently. It was hard for him at first, but he found some books to look at so that kept him happy. For the first time ever he agreed to wear a cape as he got his haircut. Usually he won't let it be put on and he ends up getting hair all over himself.
When we got home I took a few minutes to type some lessons for Samuel and then I decided that before I could prepare dinner I HAD TO clean up the kitchen! Of course I was interrupted by everyone numerous times, and dinner ultimately was not ready until 7:30pm. My poor husband, who isn't feeling all that well anyways, was a bit overwhelmed by all the whining hungry children, plus he was rather hungry himself!
Samuel and I started his homework, which I ended up reducing in quantity because of the late hour, at about 8:45pm. At least he finished pretty quickly! He went through his usual after-school grumpies today, but tonight he was quite jovial
Samuel got his hair cut this afternoon. I took all 4 children in, and a family with 3 boys was before us! I was worried about Samuel waiting patiently. It was hard for him at first, but he found some books to look at so that kept him happy. For the first time ever he agreed to wear a cape as he got his haircut. Usually he won't let it be put on and he ends up getting hair all over himself.
When we got home I took a few minutes to type some lessons for Samuel and then I decided that before I could prepare dinner I HAD TO clean up the kitchen! Of course I was interrupted by everyone numerous times, and dinner ultimately was not ready until 7:30pm. My poor husband, who isn't feeling all that well anyways, was a bit overwhelmed by all the whining hungry children, plus he was rather hungry himself!
Samuel and I started his homework, which I ended up reducing in quantity because of the late hour, at about 8:45pm. At least he finished pretty quickly! He went through his usual after-school grumpies today, but tonight he was quite jovial
Yet Another Snow Day Yesterday
We had a lovely snowfall very early this past Sunday morning. Weather forecasts for our area had mentioned freezing rain changing into rain, so we were quite surprised to wake up that morning with three inches of snow on the ground! This after the ice-encrusted snowfall from a few weeks ago had just melted a few days earlier. Another three inches of snow fell by late Sunday morning. Then we got a bit of rain and freezing rain that afternoon, but the temperature was into the lower 40s so everything was kind of mushy. It was easy to clear the snow away, but school was still closed yesterday.
Samuel knew even Sunday morning when he saw the snow that he would not have school Monday. I prepared a few short lessons for him, which we did late in the morning. He hasn't been in a very good mood the past few days. He seems to be in his own little world of "The Upside Down Show." He has also been very territorial with the television. He doesn't want to watch anything but when the other boys or my husband watch television (do you think that I ever get to even think of watching the television during the day??? That is an activity I indulge in only at the "edges" of the day when noone else is awake to make demands of me!) he gets quite perturbed when they want to change the channel. Changing the channel time would be a good time to use the technique of "counting down" we were taught by our in-home service providers, but the boys and my husband don't usually think of things like that (I'm still learning too!).
I had hoped to clean, organize, and just have a nice relaxing day yesterday, but I was on edge the whole day because I was preparing to go to a parents support group meeting last night. That meant anticipating and planning all my required chores so that I could make my getaway in time for the meeting. As usual, I was late and , as usual, quite stressed out!
We have a small support group that meets at our church. It is for parents of children with special needs. We don't have a regular showing at these meetings; heck, I probably only attend one every three or four months. Most of the people who attend are moms and most of them are mothers of autistic children. The group is open to anyone, not just members of our church. One mom attending last night just found out her daughter has Rett Syndrome. I knew enough that it was an autistic spectrum disorder but I don't know much more than that. Another thing to add to the "things to be researched" list!
It's hard for order to be maintained at our meetings because we have (God bless them!) some rather talkative people. That's okay, in a way, because that is good therapy for us. I do think however, that our group could benefit from some basic meeting structure. I should talk to the group organizer about taking on a "facilitator" type function. I'd offer to do it, but I just don't attend regularly enough. An upcoming project for our group is to get together a directory of resources for each other. We're going to share our most useful websites, people, and phone numbers with each other.
I wouldn't call the area I live in rural, but we are just "over the mountains" from the Greater Northern Virginia area so we don't have anything like an autism society chapter out here, yet anyways. I suspect that will change in the next few years. I could travel about 15-20 miles to another town where they have an autism support group, but I haven't done so yet. I think I need to be here at home where I am needed while the baby is so young and Samuel needs the consistency in his evening routine. I do, however, take one or two evenings each month to get out: either to a support group meeting, a Special Education Advisory Committee meeting, or perhaps to go out for coffee with a friend (I am finding my best friends these days are other moms with special needs children). For right now baby girl has to come with me when I go out, mainly because I'm still breastfeeding her. My husband has kept her a few times though and I'll definitely leave her at home when the breastfeeding stops. I'm finding the group of people I'm getting to know through blogging to be a great support group as well!
My homeschool student (oldest son) is sick today, which is why I've had the luxury of time on the computer like this during the day. Now time to get back to work!
Samuel knew even Sunday morning when he saw the snow that he would not have school Monday. I prepared a few short lessons for him, which we did late in the morning. He hasn't been in a very good mood the past few days. He seems to be in his own little world of "The Upside Down Show." He has also been very territorial with the television. He doesn't want to watch anything but when the other boys or my husband watch television (do you think that I ever get to even think of watching the television during the day??? That is an activity I indulge in only at the "edges" of the day when noone else is awake to make demands of me!) he gets quite perturbed when they want to change the channel. Changing the channel time would be a good time to use the technique of "counting down" we were taught by our in-home service providers, but the boys and my husband don't usually think of things like that (I'm still learning too!).
I had hoped to clean, organize, and just have a nice relaxing day yesterday, but I was on edge the whole day because I was preparing to go to a parents support group meeting last night. That meant anticipating and planning all my required chores so that I could make my getaway in time for the meeting. As usual, I was late and , as usual, quite stressed out!
We have a small support group that meets at our church. It is for parents of children with special needs. We don't have a regular showing at these meetings; heck, I probably only attend one every three or four months. Most of the people who attend are moms and most of them are mothers of autistic children. The group is open to anyone, not just members of our church. One mom attending last night just found out her daughter has Rett Syndrome. I knew enough that it was an autistic spectrum disorder but I don't know much more than that. Another thing to add to the "things to be researched" list!
It's hard for order to be maintained at our meetings because we have (God bless them!) some rather talkative people. That's okay, in a way, because that is good therapy for us. I do think however, that our group could benefit from some basic meeting structure. I should talk to the group organizer about taking on a "facilitator" type function. I'd offer to do it, but I just don't attend regularly enough. An upcoming project for our group is to get together a directory of resources for each other. We're going to share our most useful websites, people, and phone numbers with each other.
I wouldn't call the area I live in rural, but we are just "over the mountains" from the Greater Northern Virginia area so we don't have anything like an autism society chapter out here, yet anyways. I suspect that will change in the next few years. I could travel about 15-20 miles to another town where they have an autism support group, but I haven't done so yet. I think I need to be here at home where I am needed while the baby is so young and Samuel needs the consistency in his evening routine. I do, however, take one or two evenings each month to get out: either to a support group meeting, a Special Education Advisory Committee meeting, or perhaps to go out for coffee with a friend (I am finding my best friends these days are other moms with special needs children). For right now baby girl has to come with me when I go out, mainly because I'm still breastfeeding her. My husband has kept her a few times though and I'll definitely leave her at home when the breastfeeding stops. I'm finding the group of people I'm getting to know through blogging to be a great support group as well!
My homeschool student (oldest son) is sick today, which is why I've had the luxury of time on the computer like this during the day. Now time to get back to work!
Sunday, February 25, 2007
What We Did After We Found Out
Doing my best to remember without any notes..
After Samuel was diagnosed with autism, at 2 years and 10 months, he attended speech therapy for a year before we put him in school. One of the first things we were taught was to teach Samuel to point at things. At about the time he was diagnosed he was not verbal and he had just started leading us to things he wanted and was putting cups in our hand when he wanted a drink. I observed many of Samuel's sessions and they involved a lot of playing at a table. He sat in a booster chair at the table.
Samuel also attended Music Therapy during this year as well. I have a videotape of some of his sessions and it is such fun to look back on it now. He was such a cute 3 year old! The activities involved turn-taking and responding to simple questions. He loved when he got to play on an electronic keyboard and strum a guitar. During this year he had a short spell of going through "separation anxiety" when I left him for his sessions. He was three years old and I'm trying to remember, I think neurotypical children are maybe about half that age when they go through it?
When Samuel was almost 3 1/2 a new baby brother came along. Much to my surprise there were no jealousy issues from either older brother. I realized 4 months later, when my oldest son was starting "kindergarten" at home, that I just couldn't leave Samuel parked in front of the TV all day and I just didn't have the know-how or the energy after dealing with everyone else, to be able to engage him in any meaningful activity. I contacted the local school system to start the process of evaluating him. The program offered to us for Samuel sounded pretty good and I had no problem with him attending it the entire 4 1/2 hours per day.
Samuel did wonderfully at school right away. He was pretty mellow and compliant the first few years. He was fortunate enough to have the same special education teacher for 4 years! He was in Pre-Kindergarten for 1 1/2 years. After Samuel's first year the teacher encouraged us parents to work with our children at home. She showed us some drill work to do, which we used to do seated on the floor in the kid's playroom. I am so grateful to this teacher for showing us this, it laid the foundation for doing homework with him, as I try to do regularly now.
In kindergarten he participated a bit in an inclusion class. Due to some staffing difficulties I would say that it wasn't all that successful, but things improved greatly when he started first grade. I was very happy with the aids and the special education teacher. Except for lunchtime and some time for sensory activities, he stayed in the inclusion room all day, along with 4 or 5 other autistic-type children. He did quite well in reading, which I was very happy about. As first grade ended he started to assert his temper a bit more at school, but nothing all that serious.
At home was a different story. Samuel was becoming very difficult to manage. I was dragging him around to get him to do things and he was starting to become a bit aggressive when he was asked to do things that he didn't want to do. To make a long story short, we were able to obtain in-home services for him. He has learned to follow a visual schedule and that along with a few other techniques have helped smooth many stessful situations here at home. He has a ways to go, but he is slowly learning how to control himself when he gets upset.
Now Samuel is in second grade and this has been a very different year. His special education teacher left for a new school district. I like the new teacher, but she is a bit short on experience so I have had to be much more vigilant in keeping up with Samuel's work. Actually, this isn't all that bad, I probably should have been more involved and asked more questions in previous years.
This is a very brief summary of what we have gone through the past few years. Like all families, we have our ups and down, but I will say that for right now things are pretty good at home and at school. We do have challenges, but I feel like I have some good tools and strategies (that I learned from our in-home service providers) to work with Samuel. I'm doing my best to avoid putting Samuel on medication, but as he ages if it looks like he has anxiety trouble then I will consider it. I'm trying to help Samuel learn to communicate and to help him develop some interests. If left to his own devices he can drift off a bit.
After Samuel was diagnosed with autism, at 2 years and 10 months, he attended speech therapy for a year before we put him in school. One of the first things we were taught was to teach Samuel to point at things. At about the time he was diagnosed he was not verbal and he had just started leading us to things he wanted and was putting cups in our hand when he wanted a drink. I observed many of Samuel's sessions and they involved a lot of playing at a table. He sat in a booster chair at the table.
Samuel also attended Music Therapy during this year as well. I have a videotape of some of his sessions and it is such fun to look back on it now. He was such a cute 3 year old! The activities involved turn-taking and responding to simple questions. He loved when he got to play on an electronic keyboard and strum a guitar. During this year he had a short spell of going through "separation anxiety" when I left him for his sessions. He was three years old and I'm trying to remember, I think neurotypical children are maybe about half that age when they go through it?
When Samuel was almost 3 1/2 a new baby brother came along. Much to my surprise there were no jealousy issues from either older brother. I realized 4 months later, when my oldest son was starting "kindergarten" at home, that I just couldn't leave Samuel parked in front of the TV all day and I just didn't have the know-how or the energy after dealing with everyone else, to be able to engage him in any meaningful activity. I contacted the local school system to start the process of evaluating him. The program offered to us for Samuel sounded pretty good and I had no problem with him attending it the entire 4 1/2 hours per day.
Samuel did wonderfully at school right away. He was pretty mellow and compliant the first few years. He was fortunate enough to have the same special education teacher for 4 years! He was in Pre-Kindergarten for 1 1/2 years. After Samuel's first year the teacher encouraged us parents to work with our children at home. She showed us some drill work to do, which we used to do seated on the floor in the kid's playroom. I am so grateful to this teacher for showing us this, it laid the foundation for doing homework with him, as I try to do regularly now.
In kindergarten he participated a bit in an inclusion class. Due to some staffing difficulties I would say that it wasn't all that successful, but things improved greatly when he started first grade. I was very happy with the aids and the special education teacher. Except for lunchtime and some time for sensory activities, he stayed in the inclusion room all day, along with 4 or 5 other autistic-type children. He did quite well in reading, which I was very happy about. As first grade ended he started to assert his temper a bit more at school, but nothing all that serious.
At home was a different story. Samuel was becoming very difficult to manage. I was dragging him around to get him to do things and he was starting to become a bit aggressive when he was asked to do things that he didn't want to do. To make a long story short, we were able to obtain in-home services for him. He has learned to follow a visual schedule and that along with a few other techniques have helped smooth many stessful situations here at home. He has a ways to go, but he is slowly learning how to control himself when he gets upset.
Now Samuel is in second grade and this has been a very different year. His special education teacher left for a new school district. I like the new teacher, but she is a bit short on experience so I have had to be much more vigilant in keeping up with Samuel's work. Actually, this isn't all that bad, I probably should have been more involved and asked more questions in previous years.
This is a very brief summary of what we have gone through the past few years. Like all families, we have our ups and down, but I will say that for right now things are pretty good at home and at school. We do have challenges, but I feel like I have some good tools and strategies (that I learned from our in-home service providers) to work with Samuel. I'm doing my best to avoid putting Samuel on medication, but as he ages if it looks like he has anxiety trouble then I will consider it. I'm trying to help Samuel learn to communicate and to help him develop some interests. If left to his own devices he can drift off a bit.
Saturday, February 24, 2007
The Calm Before the Storm
Saturday morning... I woke up hours ago and came downstairs to read "Unstrange Minds." I just got it in the mail a few days ago and am finding it fascinating. Finally, someone who is saying something sensible about the increase in cases of autism! I was too tired to read, however, so I only got a few pages read and fell asleep in the chair.
The boys woke up way too early so they are now starting to run around the house and I just heard my husband get up. Samuel has been very emotional the past few days so I'm wondering what today will hold for everyone. I am hoping my husband takes him for a haircut this morning (that is a story in and of itself!). I have grocery shopping to fit in between the baby's nap and dropping one of the boys off for a birthday party. Oh, two of the kids are sick as well.
I was hoping for a good bit of time alone this morning but I guess it won't happen! I better get my shower and start the laundry train (it is just endless!). It's only a matter of time before everyone finds me hiding by the computer!
The boys woke up way too early so they are now starting to run around the house and I just heard my husband get up. Samuel has been very emotional the past few days so I'm wondering what today will hold for everyone. I am hoping my husband takes him for a haircut this morning (that is a story in and of itself!). I have grocery shopping to fit in between the baby's nap and dropping one of the boys off for a birthday party. Oh, two of the kids are sick as well.
I was hoping for a good bit of time alone this morning but I guess it won't happen! I better get my shower and start the laundry train (it is just endless!). It's only a matter of time before everyone finds me hiding by the computer!
Wednesday, February 21, 2007
How We Found Out
Samuel was born in early 1999. His older brother was 16 1/2 months old when he was born. He was a BIG baby, almost 10 1/2 lbs. Ironically, he is the only one of my 4 children that I did not deliver by C-section. I suffered a 4th degree tear and my poor body has never been the same since then!
Samuel's development was quite normal for the first year, he hit all his baby milestones like sitting up, crawling, and walking within the normal range of age. He had a very sing-song type of babbling.
He was not talking when he reached 2 years old, but we didn't think too much of it because his older brother did not start talking until after he turned two. The only word Samuel had ever said was "cheese," which he only said several times when we were about to get cheeseburgers for lunch. He only repeated it after I said "cheeseburger" and after a few weeks he wouldn't say it at all.
We began to notice, a few months after his second birthday, that he did not play with toys in the normal sense. He would stare at them, pick them up and drop them, press buttons repetitively. When he was outside in our back yard he would either run around the perimeter of the yard or he would sit and pick up/drop handfuls of dirt repeatedly.
My mother expressed concern to me about Samuel's behavior when he was about 28 months old. She suggested that I take him to a doctor. I waited about 5 or 6 months after that, just to see if Samuel would get more "on track" with his development, but he did not. I started at our family practise pediatrician. She referred us to a university hospital and we saw a developmental pedicatrician. After about a 5 minute observation he gave Samuel a diagnosis of "autistic spectrum disorder." I was not surprised to get this diagnosis. I was a bit relieved because I was tired of wondering as I had been doing for almost 6 months. It was suggested that I contact our county's early intervention program. We also saw an education specialist at the hospital and she suggested that we put Samuel in some kind of school setting that had a big focus on developing communication. We did begin speech therapy and he attended a weekly music therapy session at the time, but I did not contact the school system for an evaluation until after he was 3 1/2. I realized after 10 months that I could not set up a sufficient teaching environment for him at home. I must say that the biggest disappointment I have had in dealing with autism has been the lack of information out there for parents who have just gotten a diagnosis for their child. I was very interested in working with Samuel at home, and all directions I was being pointed in involved sending him off to school.
To be continued....
Samuel's development was quite normal for the first year, he hit all his baby milestones like sitting up, crawling, and walking within the normal range of age. He had a very sing-song type of babbling.
He was not talking when he reached 2 years old, but we didn't think too much of it because his older brother did not start talking until after he turned two. The only word Samuel had ever said was "cheese," which he only said several times when we were about to get cheeseburgers for lunch. He only repeated it after I said "cheeseburger" and after a few weeks he wouldn't say it at all.
We began to notice, a few months after his second birthday, that he did not play with toys in the normal sense. He would stare at them, pick them up and drop them, press buttons repetitively. When he was outside in our back yard he would either run around the perimeter of the yard or he would sit and pick up/drop handfuls of dirt repeatedly.
My mother expressed concern to me about Samuel's behavior when he was about 28 months old. She suggested that I take him to a doctor. I waited about 5 or 6 months after that, just to see if Samuel would get more "on track" with his development, but he did not. I started at our family practise pediatrician. She referred us to a university hospital and we saw a developmental pedicatrician. After about a 5 minute observation he gave Samuel a diagnosis of "autistic spectrum disorder." I was not surprised to get this diagnosis. I was a bit relieved because I was tired of wondering as I had been doing for almost 6 months. It was suggested that I contact our county's early intervention program. We also saw an education specialist at the hospital and she suggested that we put Samuel in some kind of school setting that had a big focus on developing communication. We did begin speech therapy and he attended a weekly music therapy session at the time, but I did not contact the school system for an evaluation until after he was 3 1/2. I realized after 10 months that I could not set up a sufficient teaching environment for him at home. I must say that the biggest disappointment I have had in dealing with autism has been the lack of information out there for parents who have just gotten a diagnosis for their child. I was very interested in working with Samuel at home, and all directions I was being pointed in involved sending him off to school.
To be continued....
Tuesday, February 20, 2007
Tattoo Curiousity
(Samuel)Mom, does Popeye have a tattoo?
(My reply)Yes Samuel, he has a tattoo on his arm. What is it?
It is an anchor.
Do tattoos hurt?
I think it hurts a little bit if you get a real tattoo. A "toy" tattoo doesn't hurt
I don't want a tattoo!
That's okay! Remember, toy tattoos don't hurt.
Does a tattoo wash off?
A toy tattoo does. A real one doesn't .
I get a "stamp tattoo" at speech!
(My reply)Yes Samuel, he has a tattoo on his arm. What is it?
It is an anchor.
Do tattoos hurt?
I think it hurts a little bit if you get a real tattoo. A "toy" tattoo doesn't hurt
I don't want a tattoo!
That's okay! Remember, toy tattoos don't hurt.
Does a tattoo wash off?
A toy tattoo does. A real one doesn't .
I get a "stamp tattoo" at speech!
Sunday, February 18, 2007
Now I Can Say "I'm My Son's Advocate"
Early in my experience of autism with Samuel I was turned off by a few consultants who urged me to be very demanding with the local school system about moving his evaluation process along. "You have to advocate for your child," they told me. At the time I wasn't even sure I wanted to put Samuel in school. I was still convinced that I would be able to educate him, with supports (which I was hoping to get from school) at home. I'll have to go more into that later.
In this early stage, probably because of my strong desire to educate my children at home and because of my somewhat Libertarian leanings, I was trying my best to avoid "government" help. My thoughts were (and still are) also guided by a principle in Catholic Social Teaching called subsidiarity. ( As I interpret this, my childrens' education is the responsibility of my husband and me. I do not believe that it is the job of our government to educate our children, nor do I believe that it should be the job of the government to regulate the education of our children. )
I came to hate the word "advocate" and all the images it invoked (being overly demanding, not accepting the responsibility of managing the care and education of my own child).
I am of the opinion that my husband and I are the ones responsible for raising our children properly. We want our children to grow up with our beliefs and we see lots of problems with farming them out to others to educate them and raise them, especially when we see problems with what they are being taught at these outside places. Well, in spite of having this opinion, after a year of having Samuel at home with me after he was diagnosed I realized that I just did not have the resources that I needed to properly educate him. I also had a new baby boy and a 5 year old son I was teaching. I decided to delegate Samuel's education to our local public school, with very good results. There were (and still are) concerns, but as a resource, putting Samuel in school has been very helpful. This is something that I must constantly weigh however, is it worth having others educate him? I have had reasons to question this in the past year, the scale has tipped more to the "disadvantage" side. In addition to that, Samuel notices that his brother "does school" at home, and he likes the idea of that for himself!
I have come to realize that I have to work within the system that is in place (many many resources are available to us through "government"), and that advocacy doesn't have to be this horrible thing. It is merely doing the job I am meant to do as a parent, to raise my child and obtain the necessary resources to do so. During my son's first 4 years of school I did not question his situation at school. That has changed, due to personnel changes and probably also because I am trying to be more involved and aware of what he is doing.
I can now manage to say "I am my son's advocate," but I do still cringe a little at that "a" word!
In this early stage, probably because of my strong desire to educate my children at home and because of my somewhat Libertarian leanings, I was trying my best to avoid "government" help. My thoughts were (and still are) also guided by a principle in Catholic Social Teaching called subsidiarity. ( As I interpret this, my childrens' education is the responsibility of my husband and me. I do not believe that it is the job of our government to educate our children, nor do I believe that it should be the job of the government to regulate the education of our children. )
I came to hate the word "advocate" and all the images it invoked (being overly demanding, not accepting the responsibility of managing the care and education of my own child).
I am of the opinion that my husband and I are the ones responsible for raising our children properly. We want our children to grow up with our beliefs and we see lots of problems with farming them out to others to educate them and raise them, especially when we see problems with what they are being taught at these outside places. Well, in spite of having this opinion, after a year of having Samuel at home with me after he was diagnosed I realized that I just did not have the resources that I needed to properly educate him. I also had a new baby boy and a 5 year old son I was teaching. I decided to delegate Samuel's education to our local public school, with very good results. There were (and still are) concerns, but as a resource, putting Samuel in school has been very helpful. This is something that I must constantly weigh however, is it worth having others educate him? I have had reasons to question this in the past year, the scale has tipped more to the "disadvantage" side. In addition to that, Samuel notices that his brother "does school" at home, and he likes the idea of that for himself!
I have come to realize that I have to work within the system that is in place (many many resources are available to us through "government"), and that advocacy doesn't have to be this horrible thing. It is merely doing the job I am meant to do as a parent, to raise my child and obtain the necessary resources to do so. During my son's first 4 years of school I did not question his situation at school. That has changed, due to personnel changes and probably also because I am trying to be more involved and aware of what he is doing.
I can now manage to say "I am my son's advocate," but I do still cringe a little at that "a" word!
Saturday, February 17, 2007
My Mission
I have been slowly reading through From Emotions to Advocacy by Pam Wright and Peter Wright. This is a wonderful book, but I find trying to take all of this in very overwhelming so I am going through it and taking the steps to organize my thoughts, documents, and actions, like I said, slowly.
One of the first steps is to prepare a mission statement "that describes the reasons you are advocating for your child." Here is mine:
My mission is to raise Samuel in a way that will prepare him to lead a healthy productive life in which he uses his talents to the greatest extent possible and thereby glorifies the God who created him.
This is the same mission that I have for all of my children.
Next, I am supposed to come up with goals. I have to state my goals every time my son's in-home services are reviewed (every 6 months) by our county, so I have 6 mo., 2 yr., and 5 yr. goals. I'll share these with you later. Samuel just finished dressing himself and is awaiting his pop-tart. I have to go see if he put anything on backwards.
One of the first steps is to prepare a mission statement "that describes the reasons you are advocating for your child." Here is mine:
My mission is to raise Samuel in a way that will prepare him to lead a healthy productive life in which he uses his talents to the greatest extent possible and thereby glorifies the God who created him.
This is the same mission that I have for all of my children.
Next, I am supposed to come up with goals. I have to state my goals every time my son's in-home services are reviewed (every 6 months) by our county, so I have 6 mo., 2 yr., and 5 yr. goals. I'll share these with you later. Samuel just finished dressing himself and is awaiting his pop-tart. I have to go see if he put anything on backwards.
Friday, February 16, 2007
A Favorite Line of Conversation
It has been a while since we heard this, but Samuel went through it as he was getting dressed this morning:
Mommy, what does WETA spell?
(My reply) It doesn't spell anything. It doesn't stand for
anything.What WGBH spells?
WGBH doesn't spell anything, it doesn't stand for anything. They
are call letters that identify a TV station.What does TLC spell?
TLC doesn't spell anything, it stands for "The Learning Channel"
What does TBS stand for?
TBS stands for "Turner Broadcasting System"
They show movies?
They show some movies.. Oh, maybe you are thinking of TCM "Turner Classic Movies"
Then he went on to talk about what company made Cyberchase, his current love/hate/overload the senses completely TV show.
A New Routine
Wow, I couldn't be this consistent if I tried! My posting times the past 3 mornings have been just about the same! Yes, it's another snow day and I just finished typing Samuel's lessons AGAIN! This probably means that the boys will wake up any moment and I had better get in the shower!
What are we going to do when school reopens? Samuel is liking the life we have had this week very very much!
Samuel is amazing me with the work he is doing. Not just the work either, his cooperativeness! I guess it's just a testament to the importance of routine and an incentive system that is meaningful. These past 3 days are probably the best routine I have had with Samuel since the baby was born. I'll try to post some pictures of Samuel's work soon. It always takes me a while to figure these things out!
What are we going to do when school reopens? Samuel is liking the life we have had this week very very much!
Samuel is amazing me with the work he is doing. Not just the work either, his cooperativeness! I guess it's just a testament to the importance of routine and an incentive system that is meaningful. These past 3 days are probably the best routine I have had with Samuel since the baby was born. I'll try to post some pictures of Samuel's work soon. It always takes me a while to figure these things out!
Thursday, February 15, 2007
Mom's Marathon
From the time I made my post yesterday morning I was not able to pause until about 3:00. I had the luxury of a short nap because my baby's nap coincided with my being able to take a break. Then, after about 45 minutes it was another mad dash until 10pm. Probably nothing out of the ordinary for having 4 children, I guess it's maddening in that we are out of our normal routine. We are fortunate in that we can depend on Samuel to play on his own for short periods of time without having to worry about his safety. I know some families that cannot do that, their children get into trouble or are self-injurious. I'm sure we'll face some spells where he will be up to some mischief and will keep us on our toes, but things are pretty calm with him right now.
I was able to work with Samuel two different times: the first at about 1pm (which I had hoped to do at about 10:30!). He was not very cooperative, but I waited him out a bit, used the token board with some mini-marshmallows, and we got through some Reading and a Math exercise. It took us 20 minutes. Then he got to play Playstation.
Our second "Work Time" was just before dinner, 6pm. He was much more cooperative this time and it only took us 13 minutes to work on some Social Studies, Science, and Religion. Then he got to play on the computer until it was dinner time.
Did I ever get to do anything fun with the boys yesterday? Not like I had hoped to. However, while his brothers were out playing in the snow with a neighbor, I spent some time "playing" with Samuel in the play room. We tortuously worked a farm jigsaw puzzle (he had to go jump on the mini-tramp after setting down just about every piece, which I had to show him) and then we sang "Old McDonald" He joined in quite nicely! My oldest son seemed happy that I read to him before bedtime last night. We just started a new novel, from a series about boys at a boarding school written by a priest in the late 19th century. The language is very different, but the stories are so appealling to my 9 year old!
As I was getting his baby sister to sleep last night Samuel came and found me in her room and asked "Mom, can I do more school work at home tomorrow?" I'm sure this question stems from not wanting to go to school, but I wonder if it means he is actually starting to enjoy our "Work Times"? Samuel will get his wish today, school is closed again! I just finished typing lessons for all the same subjects that we did yesterday.
Samuel just came in and said "Mommy, there's snow today. No school today!" He has the biggest smile on his face and has gone prancing out of the room!
It's shower time!
I was able to work with Samuel two different times: the first at about 1pm (which I had hoped to do at about 10:30!). He was not very cooperative, but I waited him out a bit, used the token board with some mini-marshmallows, and we got through some Reading and a Math exercise. It took us 20 minutes. Then he got to play Playstation.
Our second "Work Time" was just before dinner, 6pm. He was much more cooperative this time and it only took us 13 minutes to work on some Social Studies, Science, and Religion. Then he got to play on the computer until it was dinner time.
Did I ever get to do anything fun with the boys yesterday? Not like I had hoped to. However, while his brothers were out playing in the snow with a neighbor, I spent some time "playing" with Samuel in the play room. We tortuously worked a farm jigsaw puzzle (he had to go jump on the mini-tramp after setting down just about every piece, which I had to show him) and then we sang "Old McDonald" He joined in quite nicely! My oldest son seemed happy that I read to him before bedtime last night. We just started a new novel, from a series about boys at a boarding school written by a priest in the late 19th century. The language is very different, but the stories are so appealling to my 9 year old!
As I was getting his baby sister to sleep last night Samuel came and found me in her room and asked "Mom, can I do more school work at home tomorrow?" I'm sure this question stems from not wanting to go to school, but I wonder if it means he is actually starting to enjoy our "Work Times"? Samuel will get his wish today, school is closed again! I just finished typing lessons for all the same subjects that we did yesterday.
Samuel just came in and said "Mommy, there's snow today. No school today!" He has the biggest smile on his face and has gone prancing out of the room!
It's shower time!
Wednesday, February 14, 2007
More snow days, Auntie had to leave early
We have received a few inches of snow and even a bit of sleet/freezing rain. My sister-in-law left a day early (Monday) since the bad weather was expected and did arrive on Tuesday.
I typed up lessons for Samuel yesterday morning and am about to do so again for today. Last night Samuel asked me "Can I do school work at home tomorrow?" He also told me "The roads are going to be slippery tomorrow!" I then asked him "What does that mean?" His reply, "No school!" He loves staying home, and I like the fact that he's starting to realize that he can still do some academic work even though he's not at school. I should try to schedule in something fun today, our days can be a little short on that since I tend to be so focused on "school."
Have to run, the boys are waking up and I have lots to prepare and hopefully can fit in a shower before the madness starts!
I typed up lessons for Samuel yesterday morning and am about to do so again for today. Last night Samuel asked me "Can I do school work at home tomorrow?" He also told me "The roads are going to be slippery tomorrow!" I then asked him "What does that mean?" His reply, "No school!" He loves staying home, and I like the fact that he's starting to realize that he can still do some academic work even though he's not at school. I should try to schedule in something fun today, our days can be a little short on that since I tend to be so focused on "school."
Have to run, the boys are waking up and I have lots to prepare and hopefully can fit in a shower before the madness starts!
Sunday, February 11, 2007
Church update: Success and Setback
My family attended church together this morning. The baby was able to stay home with my sister-in-law, so my husband had the luxury of making it through mass without any baby interruptions.
Samuel was able to sit in the "big church" about 5 minutes longer today than he did last week. The first time I tried taking him out he asked to stay longer! He is very restless as he sits in church, but it is so nice to see him notice his surroundings there. Our church experience the past few years has been him playing and stimming in the cry room.
He did so well all through mass, and then at Communion he went up to a lady sitting in the first row (who happens to belong to a religious order of sisters) and tapped her hat saying "Kachow!" a la Lightning McQueen from the movie Cars! She looked very surprised, I apologized and got Samuel back to the lobby as quickly as possible. I tried not to make too big a deal about it, but now I'll agonize about taking him up to Communion all this week. I'll probably take him up with me again next week and just keep a better hold on him. We tried hanging around a minute after mass so that Samuel could apologize to the sister. I should do that with him next week.
Samuel was able to sit in the "big church" about 5 minutes longer today than he did last week. The first time I tried taking him out he asked to stay longer! He is very restless as he sits in church, but it is so nice to see him notice his surroundings there. Our church experience the past few years has been him playing and stimming in the cry room.
He did so well all through mass, and then at Communion he went up to a lady sitting in the first row (who happens to belong to a religious order of sisters) and tapped her hat saying "Kachow!" a la Lightning McQueen from the movie Cars! She looked very surprised, I apologized and got Samuel back to the lobby as quickly as possible. I tried not to make too big a deal about it, but now I'll agonize about taking him up to Communion all this week. I'll probably take him up with me again next week and just keep a better hold on him. We tried hanging around a minute after mass so that Samuel could apologize to the sister. I should do that with him next week.
Saturday, February 10, 2007
Meeting with the teacher and principal
I mentioned early last week that I would be meeting with Samuel's teacher on Wednesday to discuss his academic progress. That ended up being the snow day so the meeting didn't happen. Now we are re-scheduled for this Monday, and the school principal will be joining us. I'm planning for this to be the first in a series of meetings in which we will look at re-vamping Samuel's entire curriculum.
At present, Samuel is in an inclusion classroom for most of the day. He is pulled out only for math. He is in 2nd grade and his goals for math follow the 1st grade requirements. It has become apparent, through his test scores and (I think) some behavior issues, that he is not being as fully engaged during class time. I believe that he just cannot follow some of the concepts that his class is covering, especially in science and social studies. He is also falling behind in reading.
It's a little scary approaching all of this because I don't want to run the risk of Samuel being taken out of inclusion, yet I don't want him to just get dragged around by his aid all day when he isn't paying attention and is "zoning out" during school. I have come up with a lot of homework exercises for him the past few weeks and I plan to take all of these in with me on Monday to show his teacher. Hopefully this will serve as a starting point, along with my requests for some testing to be done, and maybe some kind of help brought in to evaluate his setting at school.
At present, Samuel is in an inclusion classroom for most of the day. He is pulled out only for math. He is in 2nd grade and his goals for math follow the 1st grade requirements. It has become apparent, through his test scores and (I think) some behavior issues, that he is not being as fully engaged during class time. I believe that he just cannot follow some of the concepts that his class is covering, especially in science and social studies. He is also falling behind in reading.
It's a little scary approaching all of this because I don't want to run the risk of Samuel being taken out of inclusion, yet I don't want him to just get dragged around by his aid all day when he isn't paying attention and is "zoning out" during school. I have come up with a lot of homework exercises for him the past few weeks and I plan to take all of these in with me on Monday to show his teacher. Hopefully this will serve as a starting point, along with my requests for some testing to be done, and maybe some kind of help brought in to evaluate his setting at school.
Auntie is visiting!
My sister-in-law has been here for the past few days. She has lots of experience working with special needs children, and of course, she loves her nephews and niece! Out of all my relatives she has been the most direct help to me and my family over the past few years. Not to minimize the tremendous help and support that other family members have been, she is just in a position to be able to visit us more frequently. She has stayed with our children the 2 other times I have gone in the hospital to have babies since Samuel came along.
Today we took all the kids to the library and then we went out to lunch. We have been using a visual schedule (which has been implemented and refined with the help of in-home services staff members) for almost 2 years with Samuel and now we are at a point where short trips to the library, a fast food restaurant, a family restaurant, the grocery store, the movies are "do-able." I have a "portable" visual schedule that I carry with us when we go out. The biggest challenge is finding optimal times to take Samuel and have the other children cared for. Having my sister-in-law here is a big help!
It was tough today because I couldn't find our library cards, so we could only get a reduced number of videotapes. Samuel had a hard time accepting that, but we had several conversations about it before we got in the library so that helped. He almost had a melt-down in the library, but I was able to calm him down by talking to him. A few years ago it was impossible to take him to the library because he only wanted to play on the computer. He would hit other children and scream when it was time to leave.
Now we use the visual schedule. When we go in the library he has to read a book to us or with us, then he gets a bit of time to look at the videos/DVDs and then he goes up to check them out. He likes to tell the librarians how to open the videos to scan them, and how they should give them to him when they are done! We don't even give him time to play on the computer at the library anymore (because now he gets to play more frequently at home) and he accepts that just fine!
My husband and I will have the luxury of going out for dinner together tonight while my sister-in-law watches the kids. This is the first "date" we will have gone on since before the baby was born 15 months ago!
Today we took all the kids to the library and then we went out to lunch. We have been using a visual schedule (which has been implemented and refined with the help of in-home services staff members) for almost 2 years with Samuel and now we are at a point where short trips to the library, a fast food restaurant, a family restaurant, the grocery store, the movies are "do-able." I have a "portable" visual schedule that I carry with us when we go out. The biggest challenge is finding optimal times to take Samuel and have the other children cared for. Having my sister-in-law here is a big help!
It was tough today because I couldn't find our library cards, so we could only get a reduced number of videotapes. Samuel had a hard time accepting that, but we had several conversations about it before we got in the library so that helped. He almost had a melt-down in the library, but I was able to calm him down by talking to him. A few years ago it was impossible to take him to the library because he only wanted to play on the computer. He would hit other children and scream when it was time to leave.
Now we use the visual schedule. When we go in the library he has to read a book to us or with us, then he gets a bit of time to look at the videos/DVDs and then he goes up to check them out. He likes to tell the librarians how to open the videos to scan them, and how they should give them to him when they are done! We don't even give him time to play on the computer at the library anymore (because now he gets to play more frequently at home) and he accepts that just fine!
My husband and I will have the luxury of going out for dinner together tonight while my sister-in-law watches the kids. This is the first "date" we will have gone on since before the baby was born 15 months ago!
Thursday, February 8, 2007
Video Junkie
It's back to school today! Fortunately they start 2 hours late so I have a bit of quiet time this morning. My sister-in-law arrives today for a 5 day visit so after we drop Samuel off at school we will venture east on an hour's drive to the airport to pick her up.
Samuel, as the title of this post indicates, is a "video junkie." It's not so much that he enjoys watching them, he likes holding them, carrying them around, and especially looking at the company logos on the back of them (Columbia, Warner Brothers, etc..). One of my challenges in life is to stay a step ahead of Samuel by hiding them. We do not have a central place to store them that can be locked, so I resort to stashing them in various closets and high shelves around the house. This also means that I have to hide our step stool so that he cannot reach them. I also come up with floor-level secret hiding places, but he eventually discovers them.
When Samuel is home for a number of days in a row (as he has been this week), we will occasionally give him a video or two to look at as a reward for accomplishing something. As of last night his collection had grown to about 8 videos and DVDs and he also somehow acquired Playstation games. Yes, I let things get out of control! I drew the line at letting him take them to bed with him (except for one), and I told him that when he got up this morning the rest of them would be put away. Now I have to live up to that and actually do it! He'll be upset, but he accepts it better when I warn him ahead of time.
So, after this and any other postings I may do, I have to do a quick clean-up around the house!
Samuel, as the title of this post indicates, is a "video junkie." It's not so much that he enjoys watching them, he likes holding them, carrying them around, and especially looking at the company logos on the back of them (Columbia, Warner Brothers, etc..). One of my challenges in life is to stay a step ahead of Samuel by hiding them. We do not have a central place to store them that can be locked, so I resort to stashing them in various closets and high shelves around the house. This also means that I have to hide our step stool so that he cannot reach them. I also come up with floor-level secret hiding places, but he eventually discovers them.
When Samuel is home for a number of days in a row (as he has been this week), we will occasionally give him a video or two to look at as a reward for accomplishing something. As of last night his collection had grown to about 8 videos and DVDs and he also somehow acquired Playstation games. Yes, I let things get out of control! I drew the line at letting him take them to bed with him (except for one), and I told him that when he got up this morning the rest of them would be put away. Now I have to live up to that and actually do it! He'll be upset, but he accepts it better when I warn him ahead of time.
So, after this and any other postings I may do, I have to do a quick clean-up around the house!
Wednesday, February 7, 2007
Some success at church last Sunday!
Just a follow up to my post last Saturday, in which I mentioned the upcoming second attempt to have Samuel in the "big church." We were able to stay in the church about 5 minutes longer than the previous Sunday! I am taking no chances, I cut our stay short well before Samuel gets too anxious. I am going with direct edible reinforcers for right now. I am expecting this to be a several year process. We'll just try to increase the time in the church each week. At some point I will go to using tokens before giving him a reinforcer, and we'll go from there! Samuel started screaming in church somewhere around 2 years ago. We have sat in the cry room since then. We have worked through him pushing other children around in there, and through him thinking that" screaming and fussing = a chance to leave and go for a walk in town"
Our family started going to church separately when my daughter was born, but for the past couple months now we have been going together. My husband takes the baby and our other 2 sons and we sit separately. Lately however, my husband and the baby and Samuel and I meet in the lobby area at some point during mass. The baby is getting at that fussy antsy age!
Our family started going to church separately when my daughter was born, but for the past couple months now we have been going together. My husband takes the baby and our other 2 sons and we sit separately. Lately however, my husband and the baby and Samuel and I meet in the lobby area at some point during mass. The baby is getting at that fussy antsy age!
Snow Day!
Our area had somewhere between 2 and 4 inches of snow last night, so school is closed today! It was also closed yesterday because much of our town did not have power. Samuel is as happy as a clam when there is no school. I used to dread the days that he was home unexpectedly, but I rather like them now, more opportunities to work with him!
"Snow days" in our household don't necessarily mean that there is no schoolwork!
Once I realized school was closed yesterday I scrambled to type up some little lessons for him (I use "Writing with Symbols" software to type many of his lessons). I already had one ready for science. I then typed up one for social studies, math, and reading. At an opportune time later in the morning I seated the 3 boys in the family room and we had a "circle time." We looked at the calendar, talked about some upcoming events and the weather, and closed with a song of Samuel's choice (Twinkle, Twinkle, Little Star). Then we did our social studies lessons (A short paragraph about George Washington, with two multiple choice questions) After the lesson Samuel was able to have his daily pop-tart (which he usually has in the car on the way to school). He initially wasn't too happy about all the activity he had to get through before the pop-tart, but I was able to help him along by using edible reinforcers. He usually goes through a token board of 4 tokens before the edible, but I just went with direct edibles yesterday morning because of his mood. He was allowed to play Playstation for a while after that.
Later in the afternoon our in-home services helper went over his spelling, reading, and math with him. I spent the rest of the day trying to get some of my 9 year old's schoolwork done, and trying to keep the baby from destroying my kitchen, she is into everything these days!
I better run and go get some new lessons typed up for today now! I'm so glad I have late sleeping children!
"Snow days" in our household don't necessarily mean that there is no schoolwork!
Once I realized school was closed yesterday I scrambled to type up some little lessons for him (I use "Writing with Symbols" software to type many of his lessons). I already had one ready for science. I then typed up one for social studies, math, and reading. At an opportune time later in the morning I seated the 3 boys in the family room and we had a "circle time." We looked at the calendar, talked about some upcoming events and the weather, and closed with a song of Samuel's choice (Twinkle, Twinkle, Little Star). Then we did our social studies lessons (A short paragraph about George Washington, with two multiple choice questions) After the lesson Samuel was able to have his daily pop-tart (which he usually has in the car on the way to school). He initially wasn't too happy about all the activity he had to get through before the pop-tart, but I was able to help him along by using edible reinforcers. He usually goes through a token board of 4 tokens before the edible, but I just went with direct edibles yesterday morning because of his mood. He was allowed to play Playstation for a while after that.
Later in the afternoon our in-home services helper went over his spelling, reading, and math with him. I spent the rest of the day trying to get some of my 9 year old's schoolwork done, and trying to keep the baby from destroying my kitchen, she is into everything these days!
I better run and go get some new lessons typed up for today now! I'm so glad I have late sleeping children!
Monday, February 5, 2007
Report Card Day
Samuel's report card came home today. All of his academic subject grades went down, the lowest being a D in reading. To be honest, none of these grades really mean anything to me, because I know they aren't a good reflection of what he knows. I'm meeting with Samuel's teacher on Wednesday to discuss his curriculum. In the meantime, I'm spending lots of time making up little lessons and worksheets for him to do at home. I do small amounts of homework with him M-Thurs., and we have in-home helpers that do a bit of homework with him Tues, Wed., and Thurs. also. I learned from Samuel's first special education teacher the importance of teaching him how to work with me at home. We started when he was 4 years old, seating him on the floor and doing various activities. Now, 4 years later, I can work with him either at the kitchen table or up in my bedroom on the floor on a lapdesk. Sometimes it can take 45 minutes to do about 5 minutes of work. I follow his task with some kind of rewarding activity and give him small edible treats intermittently as he is doing his work.
Saturday, February 3, 2007
The Saturday Routine
Saturdays are usually one of my bad days. I often start with grocery shopping early in the morning. When I get home the boys are usually up, still in their pajamas, hungry, and parked in front of the TV! It then takes me all day to get on track. I like to have some kind of work session with Samuel before he gets do indulge in the computer or playstation, and that's so hard to do without making him wait until well into the afternoon. Today things were shifted a bit. I managed to get some time with Samuel before I went out to the store. The result was that the Saturday chaos just got pushed to dinner time. Oh well, at least the kids were dressed early in the day! Samuel spent more time than I would have liked on playstation. The boys watched "Cars" for about the 8th time since Christmas! I'm sure Samuel will be scripting it for days now! I spent time this morning having Samuel re-taking his science test. The test format he had at school just didn't work (45 %, and messy, messy!) so I'm typing out a version to show his teacher on Monday. The boys were asleep at about 10:00. We'll all try to go to church tomorrow morning. Wish us luck, we're on week #2 of trying to sit in the church. We've been sitting in the cry-room for almost 2 years!
Clarification on my intro
After reading the introduction I wrote about myself in my first post, I just want to clarify that I certainly don't think my family is perfect. There are some things I wish I could change. I guess I was just trying to make the point that I accept my family members and their personalities the way they are. I don't go around wishing that Samuel wasn't autistic.
Well, speaking of Samuel, he is right behind me yelling that he is going to break something. I think he wants my attention, maybe some breakfast! Have to run.
Well, speaking of Samuel, he is right behind me yelling that he is going to break something. I think he wants my attention, maybe some breakfast! Have to run.
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