Tomorrow is the one day of the year that I dread above all others. It's the day when Tom and I have to beg and plead for our son to receive the education that is appropriate for him. Seems pretty simple, right? What most parents take for granted, the "free" public school education that children get every day with barely a thought from anyone, is not so free for us, in terms of time and energy spent. Each year I worry myself into a frenzy over something that by definition should be a pleasant, or at least, tolerable and business-like, experience. A committee is set up to determine how best to educate a special needs child. This committee should, theoretically, have the best interest of the child at its heart. (remember that "no child left behind" thing?) Due to my inherent distrust of people in general, I find it hard to believe at times that anyone on the committee save for Tom and I has much interest in what's best for Sam. Of course this varies from year to year, from school to school, and from team to team. This year I feel like we are in pretty good shape- there's Tom and I , and then the team currently working with Sam, whom we are in agreement with about next year's placement, the team that spends 6 hours a day, 5 days a week with him, and have for the past 2 years.
Then there are the ones holding the purse strings. The ones who have only seen Sam on fewer occasions than there are fingers on one hand. The ones who administer tests that will claim to tell someone anything they would ever want to know about a child. The ones who know what children with Asperger's and Autism are "supposed" to be like, and what is "supposed" to work for them. These are the people who have been instructed by the people whose job it is to spend taxpayer money to save as much as they can. So I don't believe that my son's success is their first priority.
I think back to my first CPSE meetings, realize how woefully ignorant I was, and thank God that someone up above was looking out for me. I feel like it's pretty miraculous that we've been as successful as we have given our lack of experience. One good aspect of all this is that with each year that goes by, and with each experience I have, I learn something new. I've always kind of gone with my gut feelings, but now I feel like I'm gaining knowledge to back up what I've always felt was right.
So while I still dread having to go through all this to get something that should just be a no-brainer, I realize that anything worth having is worth working hard for. I will walk into the meeting with my game face on, and with confidence that no matter what, I can let my gut and my true interest in Sam's well-being guide me. It hasn't steered me wrong in 4 years, so I'm gonna stick with it!
Tuesday, March 31, 2009
Monday, March 16, 2009
Toggling between two worlds
One thing I constantly struggle with in my quest to make a success of parenting a special-needs child is the challenge of indentifying where we fit into the world. Are we members of the special needs community? Are we functional enough to embrace the realm of the "normal" world? Does it even matter? Of course the simple answer to this dilemma is that we exist in both worlds to a degree.
I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".
There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.
The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?
I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.
Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.
I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".
There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.
The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?
I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.
Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.
Wednesday, February 25, 2009
There's power in being positive
No, I'm not talking about those people who go around saying "Have a nice day" and always seem to have an insincere smile on their face. I'm talking about being positive with your child, for a refreshing change. All of us who are parents are all too familiar with those moments when your child does something you didn't see coming, usually in public, and we long for the floor to open up and swallow us. For those of us with spectrum and ADHD kids, this is territory that we learn to deal with, all of us a little differently. I've always been from the school of removing the child from the area, and dealing with it either at home or someone away from the general public. Happily, the Nurtured Heart Approach is giving me some tools to deal with these situations much more comfortably, and maybe even lesson them so I won't have to deal as much!
You see, in this house we have adapted a zero-tolerence to negativity. Not a zero tolerance to consequences for inappropriate behavior; instead we have taken a vow not to get sucked into the big, vapid vaccum of the scowling, yelling, begging, bargaining, bribing, lecturing, door-slamming brand of "discipline". We have basically vowed to erase these ineffective strategies from our lives and instead substitute something that seems to be taking root, growing, and actually working- being positive.
I think that overall our society is very negative. Just look at the news. Sure, some "feel-good" stories are thrown in for human interest, but the lead stories are always negative, doom and gloom type stuff. People who complain get lots of attention. Those who "go with the flow" or actually dare to praise someone or something are forgettable. To be sure, this attention is of the negative kind (of course), but it's still making a statement like "I'm being acknowledged- I matter! People are listening to me!"
Think of how that translates to our kids. If the only time they are getting BIG TIME attention from us is when they are misbehaving, this is gonna become the vehicle by which they define themselves. They think they get the most bang for their buck when they are bad. Think about how animated and "in the moment" you are when you are mad. Compare that to how sedate you are when spending "normal" time with them or even praising them. Even if we try to go over the top when giving them positive feedback, it somehow seems fake or too scripted. (like the overly-positive person described above).
Those of you that know Sam have seen that he is one of those kids that feeds into negative attention. Many times in the past he's expressed how he can't wait to tell someone how badly he did that day in school, or what he broke or disrupted. Clearly he is looking for the big reaction such revalations usually generate. In the past, I've felt pretty helpless in these situations, wondering how to break the cycle and turn things around.
So that's what we are doing, breaking the cycle. Making an effort to observe Sam in his day to day activities, make specific comments about what he is doing and how it contributes to the kinds of things we want him to do. We've seen a decrease in "problem" behavior overall in the last couple of weeks, an increase in his independence, and he's even been observing and commenting positively on the things that Tom and I do!
Even without any observed differences in Sam's behavior, I still would be feeling good about this approach because of the way it makes me feel about my parenting skills. I no longer feel helpless when confronted by the kinds of doubt I had when I wondered how I could help Sam get over the hump of feeling so negative about himself. I know that I am actively creating situations for him to succeed, and pointedly down-playing the ones that are not so successful. He still gets a time out when he has crossed a line, but now the time out is meant more like a break from creating successes. He's learning that in order to get back to being able to receive positive feedback and get connected with us, he has to serve his time out well, then get back in the game. I feel so much better knowing that I don't have to waste my time doing all those disipline things that never worked with him. No more yelling, and then feeling like crap after doing it.
Nothing is perfect of course, but I'm so excited about the change this approach is bringing to our family.
You see, in this house we have adapted a zero-tolerence to negativity. Not a zero tolerance to consequences for inappropriate behavior; instead we have taken a vow not to get sucked into the big, vapid vaccum of the scowling, yelling, begging, bargaining, bribing, lecturing, door-slamming brand of "discipline". We have basically vowed to erase these ineffective strategies from our lives and instead substitute something that seems to be taking root, growing, and actually working- being positive.
I think that overall our society is very negative. Just look at the news. Sure, some "feel-good" stories are thrown in for human interest, but the lead stories are always negative, doom and gloom type stuff. People who complain get lots of attention. Those who "go with the flow" or actually dare to praise someone or something are forgettable. To be sure, this attention is of the negative kind (of course), but it's still making a statement like "I'm being acknowledged- I matter! People are listening to me!"
Think of how that translates to our kids. If the only time they are getting BIG TIME attention from us is when they are misbehaving, this is gonna become the vehicle by which they define themselves. They think they get the most bang for their buck when they are bad. Think about how animated and "in the moment" you are when you are mad. Compare that to how sedate you are when spending "normal" time with them or even praising them. Even if we try to go over the top when giving them positive feedback, it somehow seems fake or too scripted. (like the overly-positive person described above).
Those of you that know Sam have seen that he is one of those kids that feeds into negative attention. Many times in the past he's expressed how he can't wait to tell someone how badly he did that day in school, or what he broke or disrupted. Clearly he is looking for the big reaction such revalations usually generate. In the past, I've felt pretty helpless in these situations, wondering how to break the cycle and turn things around.
So that's what we are doing, breaking the cycle. Making an effort to observe Sam in his day to day activities, make specific comments about what he is doing and how it contributes to the kinds of things we want him to do. We've seen a decrease in "problem" behavior overall in the last couple of weeks, an increase in his independence, and he's even been observing and commenting positively on the things that Tom and I do!
Even without any observed differences in Sam's behavior, I still would be feeling good about this approach because of the way it makes me feel about my parenting skills. I no longer feel helpless when confronted by the kinds of doubt I had when I wondered how I could help Sam get over the hump of feeling so negative about himself. I know that I am actively creating situations for him to succeed, and pointedly down-playing the ones that are not so successful. He still gets a time out when he has crossed a line, but now the time out is meant more like a break from creating successes. He's learning that in order to get back to being able to receive positive feedback and get connected with us, he has to serve his time out well, then get back in the game. I feel so much better knowing that I don't have to waste my time doing all those disipline things that never worked with him. No more yelling, and then feeling like crap after doing it.
Nothing is perfect of course, but I'm so excited about the change this approach is bringing to our family.
Friday, January 30, 2009
Connecting
One of the things I've experienced continously since my entrance into the "special needs" community is the basic need that most of us parents of "different" kids have to connect with others who share a similar exisistance. It happens everywhere I go that I enounter parents of kids on the spectrum. I can say from experience that there's nothing quite like the comfort of chatting with someone who "gets" what you go through, who can relate to the stress of an IEP meeting, someone who is probably trying to juggle dealing with their child while conversing with you, and who understands why you can't just drop your kid off at the birthday party like other parents do. There's a comraderie there that makes a stranger intimate almost immediately. Whether these chance encounters lead to lasting friendship is another matter; the initial "attraction" is a strong bond.
I think all of us in this situation are craving the same things: someone to talk to who gives us the look of recognition, more and better information about what we can do as far as interventions, and additions to the support network we all want to build around us. Those of us in the special needs parenting world can't simply go to the neighborhood block party and start talking about our kids in the traditional way and expect it to result in a life-long friendship. That conversation might go something like this: Neighbor: "We had baseball practice yesterday and Johnny hit the ball out of the park 4 times. Our team will be hard to beat this year." You: "My Jimmy threw a pencil box at a teacher and had to spend the day in the principal's office. He really didn't get, nor care, why he was there. The school is talking out-of-district placement for him for next year." Based on that conversation, you probably aren't going to get calls for many playdates. But another conversation, taking place just about anywhere you might encounter a parent of a child on the spectrum, like maybe a tae kwon do class, might go something like this:
You: "My son spent most of his kindergarten school year in the hall, cause the teachers didn't know what to do about his "disruptive" behavior." Other parent: "The school has suspended my daughter for being "agressive" and having anger issues. When can we get together for coffee and discuss strategy?"
My point here is that the need to connect is universal, in every sphere. Those of us who live with special kinds of kids just might feel the need more acutely, since there aren't whole neighborhoods of us. We seek each other out. Which is where the internet comes in. There's a great discussion about the internet community of "super-moms" taking place on John Elder Robison's blog. Read for yourself: http://jerobison.blogspot.com/2009/01/supermoms-and-mom-empowerment.html
The internet has become the "neighborhood" for moms of special needs kids. We can converse with people far and wide, from all different countries, circumstances and walks of life. The internet makes the gathering and diseminating of information so much easier, more convenient, and satisfying to do. Anything that can be done while wearing a bathrobe is ok with me!
For my part, I'm gonna keep to my New Year's resolution to reach out to people and provide them with any ideas or suggests I can. If you happen to "see" me anywhere- either in the flesh or on line, just know I'm here to listen and help!
I think all of us in this situation are craving the same things: someone to talk to who gives us the look of recognition, more and better information about what we can do as far as interventions, and additions to the support network we all want to build around us. Those of us in the special needs parenting world can't simply go to the neighborhood block party and start talking about our kids in the traditional way and expect it to result in a life-long friendship. That conversation might go something like this: Neighbor: "We had baseball practice yesterday and Johnny hit the ball out of the park 4 times. Our team will be hard to beat this year." You: "My Jimmy threw a pencil box at a teacher and had to spend the day in the principal's office. He really didn't get, nor care, why he was there. The school is talking out-of-district placement for him for next year." Based on that conversation, you probably aren't going to get calls for many playdates. But another conversation, taking place just about anywhere you might encounter a parent of a child on the spectrum, like maybe a tae kwon do class, might go something like this:
You: "My son spent most of his kindergarten school year in the hall, cause the teachers didn't know what to do about his "disruptive" behavior." Other parent: "The school has suspended my daughter for being "agressive" and having anger issues. When can we get together for coffee and discuss strategy?"
My point here is that the need to connect is universal, in every sphere. Those of us who live with special kinds of kids just might feel the need more acutely, since there aren't whole neighborhoods of us. We seek each other out. Which is where the internet comes in. There's a great discussion about the internet community of "super-moms" taking place on John Elder Robison's blog. Read for yourself: http://jerobison.blogspot.com/2009/01/supermoms-and-mom-empowerment.html
The internet has become the "neighborhood" for moms of special needs kids. We can converse with people far and wide, from all different countries, circumstances and walks of life. The internet makes the gathering and diseminating of information so much easier, more convenient, and satisfying to do. Anything that can be done while wearing a bathrobe is ok with me!
For my part, I'm gonna keep to my New Year's resolution to reach out to people and provide them with any ideas or suggests I can. If you happen to "see" me anywhere- either in the flesh or on line, just know I'm here to listen and help!
Wednesday, December 31, 2008
It's that time of year
It's the time of year to look back at the high and low points of the last 12 months, and to make resolutions. Whether we like to admit it or not, I think nearly everyone resolves to improve themselves or the world around them around New Year's. Keeping those resolutions is another story, but in the spirit of eternal hope, here's a few things I want to work on in 2009:
1. Accentuate more of Sam's positive accomplishments to him. RDI has brought me a long way down the road toward de-emphasizing the negative, but now I want to go a step further- to catch Sam in the act of doing the right thing, especially in situations that I know are difficult for him. I'm reading a book about "The Nurtured Heart Approach" which offers techniques for putting the focus on accomplishments, in an effort to make the need for negative reinforcement less. Once again, I have a fellow blogger to thank for bringing this book and approach to my attention.
2. Let go of some of the guilt and constant worry that I'm not doing enough. Many people have been kind enough to point out to me that they think I'm doing a good job, by either observing or by what they have read here. I so appreciate all your encouraging words, but now I really want to take them to heart. I want to get rid of the aspect of worry that makes me feel inadequate, but keep the part that drives me to "tweak" everything and to think outside of the box. I guess there are positives and negatives to every "flaw" we perceive in ourselves.
3. Reach out to others who are in a similar situation as ours and find a way to help them. If it's holding support group meetings more regularly, or just chatting with someone who's having an off day, I want to feel like some of the experience I've had over the past few years might help someone else too.
4. Make it a point to get together with many of the old friends I've lost touch with. I know a lot of you read this blog, and it seems like the only time we correspond is during the holidays. This year I'd like to actually get together, laugh and reminisce about the past, and catch up on the present.
I hope all of you have a wonderful 2009, and have success keeping your own resolutions!
1. Accentuate more of Sam's positive accomplishments to him. RDI has brought me a long way down the road toward de-emphasizing the negative, but now I want to go a step further- to catch Sam in the act of doing the right thing, especially in situations that I know are difficult for him. I'm reading a book about "The Nurtured Heart Approach" which offers techniques for putting the focus on accomplishments, in an effort to make the need for negative reinforcement less. Once again, I have a fellow blogger to thank for bringing this book and approach to my attention.
2. Let go of some of the guilt and constant worry that I'm not doing enough. Many people have been kind enough to point out to me that they think I'm doing a good job, by either observing or by what they have read here. I so appreciate all your encouraging words, but now I really want to take them to heart. I want to get rid of the aspect of worry that makes me feel inadequate, but keep the part that drives me to "tweak" everything and to think outside of the box. I guess there are positives and negatives to every "flaw" we perceive in ourselves.
3. Reach out to others who are in a similar situation as ours and find a way to help them. If it's holding support group meetings more regularly, or just chatting with someone who's having an off day, I want to feel like some of the experience I've had over the past few years might help someone else too.
4. Make it a point to get together with many of the old friends I've lost touch with. I know a lot of you read this blog, and it seems like the only time we correspond is during the holidays. This year I'd like to actually get together, laugh and reminisce about the past, and catch up on the present.
I hope all of you have a wonderful 2009, and have success keeping your own resolutions!
Sunday, November 23, 2008
A Thanksgiving feast, 5 days early
Last night we went out to dinner. Not an earth-shattering occasion for most people, but a pretty significant one for us. We had planned to go to the Schenectady Christmas parade, but the thought of standing outside for hours in below zero windchills was somehow not that appealing. There's only one parade I'm willing to stand outside in the cold for and that's not without a little help, but that's a blog entry for another holiday!
Now going to a restaurant to eat was one of the those things that was not even possible a couple of years ago, since even the most kid-friendly menus still didn't have anything on them that Sam would eat. Add that to the stress of having to keep Sam occupied at a table sitting down for an hour or more, his difficulty understanding why he had to communicate in a "quiet" voice, and you have a recipe for disaster that was just not worth the trouble of. The whole point of a dinner out is to relax and enjoy your meal while appreciating the company of those who accompany you. It's not an occasion that lends itself well to mental gymnastics or creative parenting exercises. So we gave it up for quite a while. (truthfully, when it came time for belt-tightening with the current economic situation, it was nice that dining out wasn't one of those luxuries we had to give up, cause it was already gone!)
We made reservations at the Italian American Community Center's restaurant since we had a gift card to use up. The place was virtually deserted when we arrived (a good strategy for when you don't know how it's gonna go is to go early!), but quickly filled up. We got the best table in the restaurant, right in front of the fireplace. I was armed with plenty of computer-printed puzzle and coloring sheets (Thanksgiving themed about one of Sam's current obsessions, the "Gilbert" series of books by Diane DeGroat- such a cute series- check them out! www.dianedegroat.com)
To make a long story short, we enjoyed a wonderful meal. We had a very attentive waiter who was friendly and had some great recommendations, Sam was completely engrossed in his word search puzzle for most of the time we waited for our food (he even made a few word searches of his own when he was done with the printed one). The food was excellent- very fresh and delicious. Sam loved his pasta and sauce and drank a huge glass of milk. At the end of the meal, we had cannollis, dad sipped a cappuccino, and I finished my wine, all the while having a pleasant conversation with Sam about school and his friends there. I don't remember feeling any apprehension or stress at all during the time we were in the restaurant, in fact the evening seemed to get better as it went along. (ok- maybe the wine helped a little) On the way home, we listened to Christmas music in the car and critiqued the songs we heard, all three of us, TOGETHER.
I guess this is what co-regulation is all about. Lately I have been feeling like Sam is less of a by-stander in the day-to-day operations of our house and more of a participant. Sure sometimes he's off in his own world and I have to remind him to do something more than a few times, but overall I feel like his existence plane is closer to ours now than it ever has been. I'm hoping we can have more experiences like last night, cause each one encourages me to try more.
Now going to a restaurant to eat was one of the those things that was not even possible a couple of years ago, since even the most kid-friendly menus still didn't have anything on them that Sam would eat. Add that to the stress of having to keep Sam occupied at a table sitting down for an hour or more, his difficulty understanding why he had to communicate in a "quiet" voice, and you have a recipe for disaster that was just not worth the trouble of. The whole point of a dinner out is to relax and enjoy your meal while appreciating the company of those who accompany you. It's not an occasion that lends itself well to mental gymnastics or creative parenting exercises. So we gave it up for quite a while. (truthfully, when it came time for belt-tightening with the current economic situation, it was nice that dining out wasn't one of those luxuries we had to give up, cause it was already gone!)
We made reservations at the Italian American Community Center's restaurant since we had a gift card to use up. The place was virtually deserted when we arrived (a good strategy for when you don't know how it's gonna go is to go early!), but quickly filled up. We got the best table in the restaurant, right in front of the fireplace. I was armed with plenty of computer-printed puzzle and coloring sheets (Thanksgiving themed about one of Sam's current obsessions, the "Gilbert" series of books by Diane DeGroat- such a cute series- check them out! www.dianedegroat.com)
To make a long story short, we enjoyed a wonderful meal. We had a very attentive waiter who was friendly and had some great recommendations, Sam was completely engrossed in his word search puzzle for most of the time we waited for our food (he even made a few word searches of his own when he was done with the printed one). The food was excellent- very fresh and delicious. Sam loved his pasta and sauce and drank a huge glass of milk. At the end of the meal, we had cannollis, dad sipped a cappuccino, and I finished my wine, all the while having a pleasant conversation with Sam about school and his friends there. I don't remember feeling any apprehension or stress at all during the time we were in the restaurant, in fact the evening seemed to get better as it went along. (ok- maybe the wine helped a little) On the way home, we listened to Christmas music in the car and critiqued the songs we heard, all three of us, TOGETHER.
I guess this is what co-regulation is all about. Lately I have been feeling like Sam is less of a by-stander in the day-to-day operations of our house and more of a participant. Sure sometimes he's off in his own world and I have to remind him to do something more than a few times, but overall I feel like his existence plane is closer to ours now than it ever has been. I'm hoping we can have more experiences like last night, cause each one encourages me to try more.
Sunday, November 16, 2008
Surgery vs. Asperger's- More in common than you think
My nephew is going to have heart surgery on December 8. The thought of this adorable, vibrant, joyful, typical 2 year old going through this scares the crap out of me. I cannot even imagine what it must be doing to my sister and brother in law. When I think of the challenges our family faces vs. dealing with a serious medical condition, I decide that the surgery must be worse. Only because it's not a part of my reality, which I'm used to. Our situation only seems to boil to a crisis point maybe once a year or so (and hopefully less frequently as we go along). I imagine being told that your child has a serious heart condition that may or may not reverse itself is similar to being told your child has Asperger's Syndrome. It's so hard to believe that your beautiful child whom you love so much is not "normal". Immediately you "circle the wagons" and start plotting your strategy. In either case, you don't know a lot about these conditions, so you have to research on your own, or consult experts who inevitably give you their version of what the reality is. You are left to make of it what you will, and absorb it into your own reality. You find support groups of parents and children who have experienced these same things, and lived to tell about it and hopefully thrive. These groups become a source of strength and camaraderie. You are told there are interventions which will help your child live as "normal" a life as possible. (there's that word again- how many times a day do I redefine "normal"?) My poor little nephew being hooked up to monitors and machines, having to be restrained from doing his typical 2 year old things, being in some kind of pain, is not much different than my five year old being subject to all kinds of behavior modifications strategies, trying to fit him into an environment that he clearly was not suited for, singling him out for his inability to "conform". The only good thing about these 2 scenarios is that both of them are/were too young to realize what is/was going on, and hopefully will not be emotionally scarred from them. We, as parents, have to take to full hit of the pain and apprehension that goes with this.
I'm sure at some point during this process my sister has been (or will be) frustrated to the point of possibly lashing out at whatever "experts" happen to be around who are treating the child more like a science experiment than our beloved child. Maybe, and hopefully, medical professionals that deal with children are more skilled at this than teachers and administrators seem to be. Frustration with a situation you have little control over is just human nature.
I guess the biggest difference between the two scenarios is that my nephew will go on the lead a perfectly "normal" life after he recovers from the surgery. The crisis situation is now, and most likely will only be now. Sam's situation is a bit more complicated, but I've got news for you. He's going to lead a perfect normal life, too. That will be normal for him, normal for us. Like my sister and my brother in law will not rest in nursing my nephew through his recovery, Tom and I will continue to plug along and nurture Sam through whatever we need to go through. Slowly, the rest of the world is recovering, and we'll keep right on working.
I'm sure at some point during this process my sister has been (or will be) frustrated to the point of possibly lashing out at whatever "experts" happen to be around who are treating the child more like a science experiment than our beloved child. Maybe, and hopefully, medical professionals that deal with children are more skilled at this than teachers and administrators seem to be. Frustration with a situation you have little control over is just human nature.
I guess the biggest difference between the two scenarios is that my nephew will go on the lead a perfectly "normal" life after he recovers from the surgery. The crisis situation is now, and most likely will only be now. Sam's situation is a bit more complicated, but I've got news for you. He's going to lead a perfect normal life, too. That will be normal for him, normal for us. Like my sister and my brother in law will not rest in nursing my nephew through his recovery, Tom and I will continue to plug along and nurture Sam through whatever we need to go through. Slowly, the rest of the world is recovering, and we'll keep right on working.
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