Tuesday, March 27, 2007
Everyday frustration
Another day in the life of the Doughertys. Things aren't going particularly bad or good, just some everyday frustrating things. One thing I'm very thankful for in life is my friends. They have been very supportive and helpful to me over the past few years, and I appreciate having that safety net around me. Occasionally, however, I come away from a get-together with them feeling more isolated than before I went. I know this is no fault of theirs, it's just sometimes I find it so hard to hear about all the activities their typically developing children engage in, how easy it is for them to get up and go to school each day, etc. It makes the distance between the life we lead here seem so far from the life other families lead. Sometimes I wish the most serious problem I had was what sport to sign my child up for, or what caterer to use for my upcoming party. I know that this is all relative- they have those things that they and their children struggle with, some of which we don't struggle with. They have never been anything but supportive of me, and welcoming of our family. Still I feel like maybe occasionally they get sick of hearing about the problems Sam has in school, the issues we have in relating to the school administration and teachers, etc. I know I get tired of it, and I'm living it! There are occasions when the job of trying to live as "normal" a life as possible gets very tiring for me. At times like these I just want to just live like the way I want to, and not have to fit my square-peg exisitence into a round hole. The truth is, I don't want my child to play in organized sports anyway, I don't want him to do things just because other kids are doing them or thats what kids do, I just want him to be happy, find a few friends, have a good time now and then. With these goals in mind and things broken down into snall, manageable units, I continue on and maybe will even live to enjoy another coffee hour!
Wednesday, March 21, 2007
A Better Week!
I'm happy and relieved to be writing this from a much better perspective than last week. I feel like the happenings this week have been a very welcome breath of fresh air into our lives. Almost like the beginning of spring is showing us that things are hopeful. First, there was a successful day at school on Monday. No outbursts, no incidents. A good report. Then, off to school again Tuesday. I was sitting at the computer catching up on some email when the phone rang- caller ID said it was "Schodack Central". All I could think was "Oh no- here we go again." Fortunately it was not bad news- Mrs. Cook was calling to tell me that school was being dismissed early due to a flood in the school basement, and that I could come and pick up Sam at any time. When I got there to pick him up, he was very upset to be going home. He was not understanding that all the kids were going home- he must have thought that he was in trouble again. I tried to explain what was happening as calmly as I could, then we laughed about how it would be hard to be in school with water on the floors. By the time we got to the car, he had calmed down and was excited about the prospect of spending the morning at Kathleen's. It took me all of 2 or 3 minutes to get him calmed down!
The problem in the basement could not be fixed in one day, so school was cancelled again today. I really feel as if this time is a gift- like it's just the breather we need to step back and get our footing again. Sam has had a really successful few days. He's been cooperative, happy and a joy to be around at home. He's willing to "go with the flow" and do things as they crop up. Any anxiety he has over routine change seems to be pretty easily gotten over. So tomorrow he'll presumably go back to school, then Friday he's off anyway due to scheduled conferences. Sooo, in my mind I just think "One more day to get through, then a 3 day weekend".
Of course I'm still concerned about his behavior last week. I know it's only been a few days of smoothness, but I feel like each day that goes like this, is another day "in the bank". I know the meetings will eventually get scheduled, and we'll be taking a hard look at everything that has happened. I hope 2 things happen if things are still going smoothly when we all get together and meet.
1. That enough time will have passed since the problems that the teachers will be able to see them in context.
2. That I don't get too complacent just because things are going well. I have to remember that the rough spots always return- the best thing I can do is make a plan to be prepared for them!
I keep thinking about what Becky's husband Jack said to me at the library on Monday night- that often behaviors will get worse (sometimes much worse) before they get better when an intervention is working. I know he's right- I've read it many times. It's good to hear it from someone else, though.
The problem in the basement could not be fixed in one day, so school was cancelled again today. I really feel as if this time is a gift- like it's just the breather we need to step back and get our footing again. Sam has had a really successful few days. He's been cooperative, happy and a joy to be around at home. He's willing to "go with the flow" and do things as they crop up. Any anxiety he has over routine change seems to be pretty easily gotten over. So tomorrow he'll presumably go back to school, then Friday he's off anyway due to scheduled conferences. Sooo, in my mind I just think "One more day to get through, then a 3 day weekend".
Of course I'm still concerned about his behavior last week. I know it's only been a few days of smoothness, but I feel like each day that goes like this, is another day "in the bank". I know the meetings will eventually get scheduled, and we'll be taking a hard look at everything that has happened. I hope 2 things happen if things are still going smoothly when we all get together and meet.
1. That enough time will have passed since the problems that the teachers will be able to see them in context.
2. That I don't get too complacent just because things are going well. I have to remember that the rough spots always return- the best thing I can do is make a plan to be prepared for them!
I keep thinking about what Becky's husband Jack said to me at the library on Monday night- that often behaviors will get worse (sometimes much worse) before they get better when an intervention is working. I know he's right- I've read it many times. It's good to hear it from someone else, though.
Saturday, March 17, 2007
Continuing difficulties
I'm sitting here looking out the window at 2 feet of new snow as I reflect on the end of an incredibly difficult week. I've lost my composure on several occasions over the past few days, and right now I'm feeling shaky at best. This weekend is going to be all about getting back in the driver's seat- getting to a place in my mind where I can go forward.
I'm having a great deal of difficulty dealing with the fact that Sam has been unable to get it together and keep it together at school. I know a lot of his problems lately are due to the fact that he's stuck in one of these "down" times. It seems like when he's like this, there is a cloud in his mind that anything has a hard time getting through. Regular day-to-day functions are very hard for him, let alone learning anything new. By contrast, when things are good and he's functioning to full capacity, most things seem to be easy for him. The very hard part for me is at this point in time is how to get him out of this current trend.
I wonder what will happen at school. Of course I'm very nervous about sending him back there on Monday. His principal assured me that this is what they want, but I'm afraid of getting the phone call to come and pick him up. I hope to be able to clear my head and write down a few things for the upcoming meetings that we will have. I don't know what to do about school for the rest of the year- do we modify things in small chunks temporarily until things turn around? What about next year? I don't know what the right option is for his schooling. Will a smaller class help? It's all so up in the air. I hope that Erin from CARD will be able to help us with some new answers. Sam can't be the first child who has had these problems, so there must be some way of helping him.
I'm slowly working my way back to determination to not let Sam's diagnosis control our lives. It's so hard when we are continually beat down, but there's no way I can give up. I guess taking it one day at a time is truly what we need to do to get through this. That, and pray that the "cloud" in his mind will fade and some clarity will be restored.
I'm having a great deal of difficulty dealing with the fact that Sam has been unable to get it together and keep it together at school. I know a lot of his problems lately are due to the fact that he's stuck in one of these "down" times. It seems like when he's like this, there is a cloud in his mind that anything has a hard time getting through. Regular day-to-day functions are very hard for him, let alone learning anything new. By contrast, when things are good and he's functioning to full capacity, most things seem to be easy for him. The very hard part for me is at this point in time is how to get him out of this current trend.
I wonder what will happen at school. Of course I'm very nervous about sending him back there on Monday. His principal assured me that this is what they want, but I'm afraid of getting the phone call to come and pick him up. I hope to be able to clear my head and write down a few things for the upcoming meetings that we will have. I don't know what to do about school for the rest of the year- do we modify things in small chunks temporarily until things turn around? What about next year? I don't know what the right option is for his schooling. Will a smaller class help? It's all so up in the air. I hope that Erin from CARD will be able to help us with some new answers. Sam can't be the first child who has had these problems, so there must be some way of helping him.
I'm slowly working my way back to determination to not let Sam's diagnosis control our lives. It's so hard when we are continually beat down, but there's no way I can give up. I guess taking it one day at a time is truly what we need to do to get through this. That, and pray that the "cloud" in his mind will fade and some clarity will be restored.
Tuesday, March 13, 2007
Kindergarten so far
Just to bring people up to date, Sam started kindergarten in September 2006. The transition was about as difficult as it could have been. We weren't prepared for how hard things were going to be and how many different strategies would have to be implemented. Right from the start the teachers and staff at his school were very eager to help and come up with a plan to make it work. They kep assuring us that they would work it all out, and of course we did whatever we could to help them along.
It took awhile, but by mid-November, things started to improve. Sam was given a regular schedule of sensory "breaks" during the day so he could take a breather, and have some down time. He was pre-set for regular activities during the day and also for when changes to the routine were going to happen. He started to respond to these interventions, and had a fairly smooth time of it from December-mid February.
Sometime around Valentine's Day, things started to deteriorate again. At first there were minor problems- he was non-cooperative, he was screaming out at various times during the day, he didn't want to do his work. During February there were 2 1/2 snow days, then February vacation, then his birthday on March 4. Since the return to school after the break, things have gotten steadily worse. His episodes of screaming and throwing objects have increased dramatically, culminating in the episode yesterday where he threw a pencil box (it appeared to be deliberate) at the teacher and hit her.
Of course I am deeply concerned about these "outbursts". I am saddened, frustrated and confused about why this is happening. His "fits" seemingly come out of nowhere- but we all know practically that this isn't the case. Something has to be setting him off, and he has to be receiving a huge payoff for it to constantly be reinforced. I feel as if I'm failing him in not being able to come up with an effective strategy to help him manage his behaviors.
It's always been his pattern from babyhood that he has had periods of time where lots of aspects of his life are difficult for him, then things get better for an extended period of time, then back to difficult again. I intend to make it a goal of mine to
1. Better predict when a "low period" is coming
2. Recognize it when it's here
3. Come up with strategies to use that will help him deal with the tough periods when they occur.
4. Help him to enjoy and acknowledge when he's enjoying success during his "good" periods.
I know I'm probably not making much sense, but I wanted to get across in a nutshell what we've been dealing with over the past few months. Most of the time, life goes on as relatively peaceful and normal. We enjoy the same activities many families do. Unfortunately, there are those times when we go into crisis mode. Our entire lives are colored by Sam's difficulties at school. I spend nearly every waking hour (and some non-waking!) trying to think outside the box about how we can learn to live with the challenges that Asperger's Syndrome brings, and not let it define our lives.
It took awhile, but by mid-November, things started to improve. Sam was given a regular schedule of sensory "breaks" during the day so he could take a breather, and have some down time. He was pre-set for regular activities during the day and also for when changes to the routine were going to happen. He started to respond to these interventions, and had a fairly smooth time of it from December-mid February.
Sometime around Valentine's Day, things started to deteriorate again. At first there were minor problems- he was non-cooperative, he was screaming out at various times during the day, he didn't want to do his work. During February there were 2 1/2 snow days, then February vacation, then his birthday on March 4. Since the return to school after the break, things have gotten steadily worse. His episodes of screaming and throwing objects have increased dramatically, culminating in the episode yesterday where he threw a pencil box (it appeared to be deliberate) at the teacher and hit her.
Of course I am deeply concerned about these "outbursts". I am saddened, frustrated and confused about why this is happening. His "fits" seemingly come out of nowhere- but we all know practically that this isn't the case. Something has to be setting him off, and he has to be receiving a huge payoff for it to constantly be reinforced. I feel as if I'm failing him in not being able to come up with an effective strategy to help him manage his behaviors.
It's always been his pattern from babyhood that he has had periods of time where lots of aspects of his life are difficult for him, then things get better for an extended period of time, then back to difficult again. I intend to make it a goal of mine to
1. Better predict when a "low period" is coming
2. Recognize it when it's here
3. Come up with strategies to use that will help him deal with the tough periods when they occur.
4. Help him to enjoy and acknowledge when he's enjoying success during his "good" periods.
I know I'm probably not making much sense, but I wanted to get across in a nutshell what we've been dealing with over the past few months. Most of the time, life goes on as relatively peaceful and normal. We enjoy the same activities many families do. Unfortunately, there are those times when we go into crisis mode. Our entire lives are colored by Sam's difficulties at school. I spend nearly every waking hour (and some non-waking!) trying to think outside the box about how we can learn to live with the challenges that Asperger's Syndrome brings, and not let it define our lives.
Monday, March 12, 2007
Hello and welcome
Hello and welcome to our special blog. I have had thoughts on and off of doing this for awhile, and I guess I've finally been driven to it by the need to be able to communicate with people. Our family is very fortunate to have so many people who care about us, who care about Sam, and are genuinely interested in what's going on with him. One thing I find very difficult is keeping everyone informed about Sam's day to day life, about his successes and about his challenges. I hope to be able to document some of what our life is like, the good and the bad, and maybe keep the people closest to us informed. I also would welcome hearing from anyone who is facing the same types of challenges we are, to be able to share thoughts and offer support.
Our son Sam is 6 years old and was diagnosed with Asperger's Syndrome at age 4 1/2. Since that time, he's made remarkable progress on some fronts but has continued to face many challenges on others. Right now he attends kindergarten in a public elementary school and is in an integrated classroom (some children with special needs, some that are "typical") Our school district has been extroidinarily supportive and adaptible. He had a very difficult start to the school year, then after implementing various strategies, he achieved a good degree of success for several months. In the last month or so, however, things have gone downhill again and we find ourselves back to the drawing board. My fears are that he will not be able to "make it" in the public school, and that we will have to place him elsewhere, effectively ending what little social connections he's made at his school now. It's so very frustrating to me that we are failing him by not being able to get to the bottom of his issues.
Sam is truly a blessing to my life. Despite the frustrations and hard work that being the parent of a child with an ASD involves, I'm happier than I've ever been in my life. I feel I'm a fighter, and I don't intend to give up seeking the best for my child.
Our son Sam is 6 years old and was diagnosed with Asperger's Syndrome at age 4 1/2. Since that time, he's made remarkable progress on some fronts but has continued to face many challenges on others. Right now he attends kindergarten in a public elementary school and is in an integrated classroom (some children with special needs, some that are "typical") Our school district has been extroidinarily supportive and adaptible. He had a very difficult start to the school year, then after implementing various strategies, he achieved a good degree of success for several months. In the last month or so, however, things have gone downhill again and we find ourselves back to the drawing board. My fears are that he will not be able to "make it" in the public school, and that we will have to place him elsewhere, effectively ending what little social connections he's made at his school now. It's so very frustrating to me that we are failing him by not being able to get to the bottom of his issues.
Sam is truly a blessing to my life. Despite the frustrations and hard work that being the parent of a child with an ASD involves, I'm happier than I've ever been in my life. I feel I'm a fighter, and I don't intend to give up seeking the best for my child.
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