Some days I wish that I had a magic wand so that I could skip by all the unpleasantness life offers and only experience the times that provide joy, bring happiness and leave me feeling fulfilled, cherished and satisfied. If only!
Oddly enough, this is how my son behaves all the time. He always has. He always manages to arrange his life so that this is exactly what he gets. Logically, it makes sense. Why would you want the bad parts if they are at all avoidable? He skips by the part that is essentially unnecessary and unpleasant as if by choice and moves straight to the part where there is potential only for reward. He did it when he started to walk; went directly from sitting on the floor to walking all over the house on his own. He didn't spend time stumbling, falling, bruised or clumsy. And he's behaving in the same manner again - now.
The other night he came in my room to ask me if I would be available one night next week. Tentatively, I said that I would be. Not wanting to push too much for what I instinctively recognized and the potentially excruciatingly embarrassing teenage divulgence of a secret social plan, extremely privileged, highly private and deeply personal information, I waited for the rest of the question (and story) to unfold.
Fundamentally, what he was asking me was if I would be able to give him a ride to a football game. What he was really asking me concerned the finer points of behavior when meeting a girl at a location other than school.
My son has never been one to have friends his own age. Despite that he knows his peers and (I hope) he interacts with them regularly during his day - he has never once invited a friend over or been invited (not that he's told me about anyway) to a friend's house. And now it seems as though he has decided that he's going to move from 'no friends' to 'hopeful girlfriend' with no in between.
When the day came, I took him to the stadium where the game was being played and dropped him off with very little discussion other than to ask him to text me when he was ready to come home and how to find me amid the streams of school buses and other parents picking up kids. I was worried, but tried very hard to trust in his judgment and his own self-confidence.
Historically, being left somewhere in the dark and without concrete verification that he had a way home and alone would leave him practically paralyzed with panic. In short, he wouldn't be able to concentrate on the fun of the outing because he would be so worried about how he's going to fare without all his familiar structures.
None of that happened.
He sent me a text when the game was over. I picked him up from a basically abandoned and darkened parking lot where he was patiently waiting - alone. He texted me once and called me twice while I was on my way. Only twice!! Not sixteen . . . . or twenty. For my son, this is tantamount to a tectonic shift in his behavior. I was afraid that something was very wrong. I worried the entire way there that I would find him a stressed out wreck and promising to never go out alone again. Instead, he was calm, relaxed, thirsty and hungry. -All perfectly normal. There was no sweating, no panic, no jitters, no need for constant verification of stability and or trust. I was amazed. I'm still amazed.
I am so proud of him!! He made plans with someone - a friend - and went out on his own.
Monday, October 17, 2011
Sunday, October 2, 2011
Steak dinner
My son and I were on our own a few nights ago. My youngest was at a Friday Night Football game with his fellow band members and would be busy most of the evening. That left my oldest and I at home together. I love spending time with both my boys, but as a single parent, I rarely have more than a few minutes with just one of them so I was really looking forward to it.
In addition, my oldest has been working on a project for the previous two and a half weeks that he finally figured out and achieved. He desperately wanted to share his success with me and I'd been so busy - not to mention exhausted - all week. He was frustrated with me, but tried very hard to accept my limitations not as disinterest, but simple exhaustion. Friday was our night to examine his work - just the two of us.
I have to say that he did a fabulous job. His task was to take my ten year old laptop and my fifteen year old desk top and merge the content of both onto a new (his old) laptop with an updated operating system; iTunes, music, software, drivers and everything. He did it - flawlessly. It's perfect and everything is here . . . a seamless transition. There is no way in the world that I could have done it on my own. I just don't speak 'IT.' He does - fluently and it shows.
I got so carried away in his ability and he was so excited to show me all the new bells and whistles that he had employed (not that I understand how) that before we knew it, it was almost 8pm. We were both starving, well past 'crabby' and quickly approaching 'hornery' on the hungry meter so we decided we needed to go out to eat.
Normally, when we go out to eat we stop for Chinese food. He's familiar with it and the people who work there. It's extremely consistent which makes it a safe bet. The also have items that he enjoys like Egg Drop Soup, Sweet and Sour Chicken and steamed rice.
The other place he enjoys is an Italian place. They will make Pasta Alfredo for him and leave off all the leaves, garnishes and other food items that most people find attractive. As well, he likes to sit at the 'bar' and watch the cooks in the kitchen. This way he can actually watch them make his food to be sure they don't put anything 'extra' in it. It's a perfect environment - if he can't be at home where he can be relatively certain that I won't throw him a curve where his dinner is concerned.
So this is why I was so surprised when he said that he was so hungry, but also tired of Chinese.
What?! Really? Hmmm . . .. Now what was I going to do? I hadn't even considered going to any other place to eat. I don't usually have the option, but here it was practically handed to me. Normally, this would be fun because we get to go find a new place. But I'm sure it didn't equate to 'fun' for Jackson. Trying a new restaurant when he's already hungry and the possibility of him being disappointed in what arrives in front of him is pure stress.
Personally, I love trying new places and I'm okay with being let down, surprised or happily content with what another cook's version of the food I order. I expect one of these outcomes. however, when my son goes out to eat nothing changes. He wants the same certainty that he gets at home and that's a rarity. So when he finds it - we stick with it.
Cautiously, I suggested a Tex-Mex place I'd heard was good and just as cautiously he agreed to try it. But when we arrived, there was a line out the door of this tiny restaurant wedged in between the Indian grocery store and the used video game shop.
Nervously, I drove on desperately hoping we wouldn't end up at some grease-infused, fast food oasis.
Where we ended up is definitely not on my list preferred eating establishments, but it's a safe place for my son - in a pinch. Since there are so few of them, I gladly took it. The alternative (the new Lebanese restaurant that I've been wanting to try) was entirely out of the question because he doesn't know what Lebanese is. I'm not sure I do either, but I'd be willing to find out. My son . . . not so much.
Dinner is different with an Aspergian because there are rules that must be followed regardless the environment. Despite that my son knows there are several different types of protein on our menu at home, All meat is labeled, "chicken." As well, there must be cheese. It's not negotiable. Vegetables cannot be consumed unless they're cooked to a point where they balance precariously on a fine line between mushy and not quite done. There can be no crunchy broccoli and only the tops are consumable. He hates all onions, doesn't like sauces, will shave the charcoal-grilled marks off everything before it's consumed and anything that resembles a casserole or a compilation of flavors is summarily rejected.
No lumps or specks, no matter how indiscernible their flavor, no 'mixed up' foods, no textural deviance's. Think 'vanilla ice cream' and then apply those parameters those parameters to all foods. Okay so now you get it. It's difficult to find foods he will eat. Pizza is okay, but not all pizza. If it's some Artisan - style fancy pants, pizza with whole, fresh basil leaves and thin slices of tomato - it may as well be Tuna Casserole and is immediately relegated to the very bottom rungs on the "Acceptability Scale."
It's true. My son had rules about food. But don't we all? What is the difference between his dislike of parsley and another's complete horror at the thought of coming within five feet of Wasabi or a Cucumber? Is there a good reason why I should try to force my son to change his distaste for sweet potatoes when my other son would not eat a mushroom to save his life? What is the real difference here?
Nothing.
There is no difference beyond that for some unexplained reason we try to change those with Asperger's because they have Asperger's instead of accepting that they just might not like sweet potatoes because they're human and have a right to opinions and the ability to decide what they just don't care for.
My son would be happy with a fillet Mignon, fettuccine Alfredo and steamed broccoli for dinner three nights a week within a repertoire of five meals that were placed on rotation this way he would know what we're having for dinner in advance.
Actually, it's all everyone cares about. We just don't say it. He's not so different from any of us. His difference is that he talks about it and insists that we acknowledge his likes and dislikes as opposed to selfishly overlooking them because it's a lot less work.
In addition, my oldest has been working on a project for the previous two and a half weeks that he finally figured out and achieved. He desperately wanted to share his success with me and I'd been so busy - not to mention exhausted - all week. He was frustrated with me, but tried very hard to accept my limitations not as disinterest, but simple exhaustion. Friday was our night to examine his work - just the two of us.
I have to say that he did a fabulous job. His task was to take my ten year old laptop and my fifteen year old desk top and merge the content of both onto a new (his old) laptop with an updated operating system; iTunes, music, software, drivers and everything. He did it - flawlessly. It's perfect and everything is here . . . a seamless transition. There is no way in the world that I could have done it on my own. I just don't speak 'IT.' He does - fluently and it shows.
I got so carried away in his ability and he was so excited to show me all the new bells and whistles that he had employed (not that I understand how) that before we knew it, it was almost 8pm. We were both starving, well past 'crabby' and quickly approaching 'hornery' on the hungry meter so we decided we needed to go out to eat.
Normally, when we go out to eat we stop for Chinese food. He's familiar with it and the people who work there. It's extremely consistent which makes it a safe bet. The also have items that he enjoys like Egg Drop Soup, Sweet and Sour Chicken and steamed rice.
The other place he enjoys is an Italian place. They will make Pasta Alfredo for him and leave off all the leaves, garnishes and other food items that most people find attractive. As well, he likes to sit at the 'bar' and watch the cooks in the kitchen. This way he can actually watch them make his food to be sure they don't put anything 'extra' in it. It's a perfect environment - if he can't be at home where he can be relatively certain that I won't throw him a curve where his dinner is concerned.
So this is why I was so surprised when he said that he was so hungry, but also tired of Chinese.
What?! Really? Hmmm . . .. Now what was I going to do? I hadn't even considered going to any other place to eat. I don't usually have the option, but here it was practically handed to me. Normally, this would be fun because we get to go find a new place. But I'm sure it didn't equate to 'fun' for Jackson. Trying a new restaurant when he's already hungry and the possibility of him being disappointed in what arrives in front of him is pure stress.
Personally, I love trying new places and I'm okay with being let down, surprised or happily content with what another cook's version of the food I order. I expect one of these outcomes. however, when my son goes out to eat nothing changes. He wants the same certainty that he gets at home and that's a rarity. So when he finds it - we stick with it.
Nervously, I drove on desperately hoping we wouldn't end up at some grease-infused, fast food oasis.
Where we ended up is definitely not on my list preferred eating establishments, but it's a safe place for my son - in a pinch. Since there are so few of them, I gladly took it. The alternative (the new Lebanese restaurant that I've been wanting to try) was entirely out of the question because he doesn't know what Lebanese is. I'm not sure I do either, but I'd be willing to find out. My son . . . not so much.
Dinner is different with an Aspergian because there are rules that must be followed regardless the environment. Despite that my son knows there are several different types of protein on our menu at home, All meat is labeled, "chicken." As well, there must be cheese. It's not negotiable. Vegetables cannot be consumed unless they're cooked to a point where they balance precariously on a fine line between mushy and not quite done. There can be no crunchy broccoli and only the tops are consumable. He hates all onions, doesn't like sauces, will shave the charcoal-grilled marks off everything before it's consumed and anything that resembles a casserole or a compilation of flavors is summarily rejected.
No lumps or specks, no matter how indiscernible their flavor, no 'mixed up' foods, no textural deviance's. Think 'vanilla ice cream' and then apply those parameters those parameters to all foods. Okay so now you get it. It's difficult to find foods he will eat. Pizza is okay, but not all pizza. If it's some Artisan - style fancy pants, pizza with whole, fresh basil leaves and thin slices of tomato - it may as well be Tuna Casserole and is immediately relegated to the very bottom rungs on the "Acceptability Scale."
It's true. My son had rules about food. But don't we all? What is the difference between his dislike of parsley and another's complete horror at the thought of coming within five feet of Wasabi or a Cucumber? Is there a good reason why I should try to force my son to change his distaste for sweet potatoes when my other son would not eat a mushroom to save his life? What is the real difference here?
Nothing.
There is no difference beyond that for some unexplained reason we try to change those with Asperger's because they have Asperger's instead of accepting that they just might not like sweet potatoes because they're human and have a right to opinions and the ability to decide what they just don't care for.
My son would be happy with a fillet Mignon, fettuccine Alfredo and steamed broccoli for dinner three nights a week within a repertoire of five meals that were placed on rotation this way he would know what we're having for dinner in advance.
Actually, it's all everyone cares about. We just don't say it. He's not so different from any of us. His difference is that he talks about it and insists that we acknowledge his likes and dislikes as opposed to selfishly overlooking them because it's a lot less work.
Saturday, September 24, 2011
Asperger's and Illness
I feel as though I have never been good at determining when my son is not feeling well. He doesn't tell me. He just goes on with his day - feels crappy and behaves badly. I am not sure if he knew when he felt bad when he was little. How could he with so little to compare his physical feeling to an no tangible link as to why illness came when it did? He needs that link after all - so it makes sense.
Not only does he not complain when he feels poorly, he doesn't typically display any signs of being ill like a fever, a cough, a runny nose. Of course, if it's a severe enough illness like the flu or something, there is no mistaking his symptoms, but colds and other minor maladies . . . nothing. The health issue that most typically affected my son was an ear infection. With these (as well as sinus infections) there is not always outward displays - until they get pretty bad. Where my son was concerned, the way I began to really know that he wasn't feeling well was when he begins behaving differently that I know he is supporting some virus or bacteria. They tend to bring out his obnocious side. So many times as a little boy I only knew he was sick when he got mouthy or overly defensive.
I suppose we all lose our ability to tolerate situations a bit when we are not feeling well. We lose our patience and our stamina. My son is no different. He loses his ability to make those learned decisions about what an appropriate reaction might look like and says the first words that come to mind. Often and because he doesn't feel well (he crabby) they aren't the best choice.
Instead, he worries. He asks 'questions like: "Will I die?", "Will I be like this forever?" and "What if I don't get better?"
-All extremely legitimate and concerning.
As a teenager he deals with illness or any physical symptom - the same way he approaches all other curiosities - with research! He makes a list, checks his symptoms against it and then rules out ailments through reason and investigation.
Unfortunately, this leads to a fair amount of hypochondria. In an world where the internet provides daily proof that nobody is really sure what is going on or why, the incomplete data surrounding just about everything, seems to ensure that we are left not with a better understanding than we had before we went looking for answers as we believe the internet should be able to provide, but a complete and utter lack of any concrete or definitive information that we can ascribe to our situation, ailment or condition.
He could have anything from a very quick and lethal cancer, to a mosquito bite. Usually, he worries that it's something really bad - because how can anyone be sure in a world where the whole of the internet could be a possibility?
My son is older now (still just a teenager) but he still navigates his life through the portal of the internet. He is less likely to ask if he might be a diabetic when he is simply exhausted. He is less prone to believing all that makes him sure he will one day become a hefty and sickly human - would this were possible from his 5'9" - 125lb, intensely active frame.
Stress tends to bring out the hypochondriac in him. When he worries, it's hard to stop somewhere. When he concentrates as he worries, his ideas grow. As he follows his thought pattern they become larger than him. Unfortunately, the same capabilities and aptitudes that make him one of the best problem solvers that I have ever met, also make him the worst worrier about his health ever.
Not only does he not complain when he feels poorly, he doesn't typically display any signs of being ill like a fever, a cough, a runny nose. Of course, if it's a severe enough illness like the flu or something, there is no mistaking his symptoms, but colds and other minor maladies . . . nothing. The health issue that most typically affected my son was an ear infection. With these (as well as sinus infections) there is not always outward displays - until they get pretty bad. Where my son was concerned, the way I began to really know that he wasn't feeling well was when he begins behaving differently that I know he is supporting some virus or bacteria. They tend to bring out his obnocious side. So many times as a little boy I only knew he was sick when he got mouthy or overly defensive.
I suppose we all lose our ability to tolerate situations a bit when we are not feeling well. We lose our patience and our stamina. My son is no different. He loses his ability to make those learned decisions about what an appropriate reaction might look like and says the first words that come to mind. Often and because he doesn't feel well (he crabby) they aren't the best choice.
Instead, he worries. He asks 'questions like: "Will I die?", "Will I be like this forever?" and "What if I don't get better?"
-All extremely legitimate and concerning.
As a teenager he deals with illness or any physical symptom - the same way he approaches all other curiosities - with research! He makes a list, checks his symptoms against it and then rules out ailments through reason and investigation.
Unfortunately, this leads to a fair amount of hypochondria. In an world where the internet provides daily proof that nobody is really sure what is going on or why, the incomplete data surrounding just about everything, seems to ensure that we are left not with a better understanding than we had before we went looking for answers as we believe the internet should be able to provide, but a complete and utter lack of any concrete or definitive information that we can ascribe to our situation, ailment or condition.
He could have anything from a very quick and lethal cancer, to a mosquito bite. Usually, he worries that it's something really bad - because how can anyone be sure in a world where the whole of the internet could be a possibility?
My son is older now (still just a teenager) but he still navigates his life through the portal of the internet. He is less likely to ask if he might be a diabetic when he is simply exhausted. He is less prone to believing all that makes him sure he will one day become a hefty and sickly human - would this were possible from his 5'9" - 125lb, intensely active frame.
Stress tends to bring out the hypochondriac in him. When he worries, it's hard to stop somewhere. When he concentrates as he worries, his ideas grow. As he follows his thought pattern they become larger than him. Unfortunately, the same capabilities and aptitudes that make him one of the best problem solvers that I have ever met, also make him the worst worrier about his health ever.
Monday, September 19, 2011
Growing up with Asperger's
He started his day like all the rest with a shower, toast and cheese, a cup of tea and a quick check of the weather and financial markets.
He found his "Thursday shirt" and got dressed, put on his shoes and then to my great surprise, asked to stay home from school. I said, "No" - I mean, what would that sort of disruption do to his schedule and ultimately to his routine? They would be annihilated and he would be stressed and unhappy. I don't think he actually wanted me to say "Yes."
When I offered him a ride to school he said that he likes his routine of taking the bus and that it's important to him to stick to what he does everyday.
He is happy today. He received a bunch of 'Happy Birthday"'s on his Facebook page all viewed on his new laptop which means he has a new to play with.
Tonight - he will need a comfortable dinner (no sauces or mixed up foods), vanilla cake with vanilla frosting and some time alone to do his homework. This is his routine. Special days mean this has to happen even more than on ordinary days because he's anticipated them more. Doing something out of the ordinary is easier for him to accept when he hasn't considered his day yet - if it's just any old day.
I would have thought that like most teenagers he would be driving by now, but he's not really interested in it. His exact words were, "I don't think I'm ready for that yet. Can I wait?" Of course I told him that there is no law that states that anybody must learn how to drive. I explained that he can wait as long as he wants to, btu that eventually, it would become necessary so that he could go to and from a job or school.
Even so, can you believe it? How many other 16 year-olds have the self-awareness to realize that they aren't ready to deal with the randomness and unpredictability of other drivers, the chaos of traffic and the multi-tasking skills required to navigate city streets full of bikes, cars, buses, pedestrians and the like? I'm not ready on most days. The fact that he realizes that he's not ready to deal with this at his age is so amazing to me. I'm sure that part of his reluctance has to do with simple fear of the unknown. But another big part is that he is looking at the larger picture.
He understands so much more than some kids his age do - as well as a few grown-ups I've met.
I Can't Do That Right Now
These words come from my son lately. They are his new defense . . . his new way of explaining why he needs to stick to his routine as opposed to veer from familiarity . . . or why he can't seem to find the means to add something new into his wardrobe.
Last week, I bought him a new pair of jeans in an effort to add a pair that wasn't stained with paint from last year's Art class or too short from last year's growth to be acceptable.
He won't wear them. He won't even try them on.
"I can't do that right now." These are the words I heard last week, last night and this morning when I asked if he would try them on so I know if they're going to be long enough (or if I need to take them back and exchange them for a different size).
The whole delay is my fault. I know better than to try new things with him - especially where clothes are concerned. I know that once I (he) finds something that works for him I should never attempt to add an alternative or change it - but I did. For some reason I believed I had to. He was growing and my wallet was shrinking so it was time for a new purchasing framework. I bought a different manufacturer of jeans in an effort to save $25. At this point, it would be worth the $25 I saved to have him in a pair of jeans that didn't terminally appear as though they were just exhumed from the depths of the laundry basket or the gutter. At this point, I'd pay $25 if I didn't have to hear, "I can't do that right now."
This morning there were no clean jeans; only the new pair still with the tags on them. I offered them as a plausible alternative knowing that there was none it only existed in my twisted mind. His response was, "I don't know if I'm going to like them" and that said it all.
It told me that school was one place where comfort really is essential because so much that's uncomfortable is going on he can't afford to give any up to clothing issues. And you know how new things are. Sometimes when you put them on they feel great just because they're different and after you wear them a while you realize that some aspect of their construction is irritating the crap out of you and there's not a thing you can do about it but undress - which isn't at all appropriate.
He was right to make this choice. He was completely correct to acknowledge his concerns and he is still right wait for a time when he has the wherewith all to deal with the issues that a new pair of jeans potentially contains without having to try and balance the demands of a new school year, new classes, new teachers and new subjects.
He doesn't care that he has a small wardrobe and he doesn't care if his peers see him in the same clothes twice in one week. He honestly doesn't care so long as he's comfortable.
I wish I had that type of self-awareness. I don't. I just accept that I have to do things that I don't want to. I blindly accept all of them simultaneously and in total. All of them - big and small. Whether it's eating what's on my plate or working at a job that is miserably unsatisfying on multiple levels or wearing uncomfortable clothing. It's what I do. I wish that I had learned to say, "I can't do that right now" at some point in my life, but it was never an option. I think I would be happier if I were just a little bit selfish on a few occasions. I know my feet would be happier if I threw out that one pair of shoes that really hurt after about 30 minutes of wear and I know I would feel better if I didn't try to eat yogurt from time to time believing for some reason that it's supposed to be good for me when it typically leaves me feeling nauseous, but I won't. I'm stuck with the shoes and the containers of yogurt that sit in my fridge - all of it.
. . . not ot mention the drawer full of jeans and only two or three pair that I actually wear.
Last week, I bought him a new pair of jeans in an effort to add a pair that wasn't stained with paint from last year's Art class or too short from last year's growth to be acceptable.
He won't wear them. He won't even try them on.
"I can't do that right now." These are the words I heard last week, last night and this morning when I asked if he would try them on so I know if they're going to be long enough (or if I need to take them back and exchange them for a different size).
The whole delay is my fault. I know better than to try new things with him - especially where clothes are concerned. I know that once I (he) finds something that works for him I should never attempt to add an alternative or change it - but I did. For some reason I believed I had to. He was growing and my wallet was shrinking so it was time for a new purchasing framework. I bought a different manufacturer of jeans in an effort to save $25. At this point, it would be worth the $25 I saved to have him in a pair of jeans that didn't terminally appear as though they were just exhumed from the depths of the laundry basket or the gutter. At this point, I'd pay $25 if I didn't have to hear, "I can't do that right now."
This morning there were no clean jeans; only the new pair still with the tags on them. I offered them as a plausible alternative knowing that there was none it only existed in my twisted mind. His response was, "I don't know if I'm going to like them" and that said it all.
It told me that school was one place where comfort really is essential because so much that's uncomfortable is going on he can't afford to give any up to clothing issues. And you know how new things are. Sometimes when you put them on they feel great just because they're different and after you wear them a while you realize that some aspect of their construction is irritating the crap out of you and there's not a thing you can do about it but undress - which isn't at all appropriate.
He was right to make this choice. He was completely correct to acknowledge his concerns and he is still right wait for a time when he has the wherewith all to deal with the issues that a new pair of jeans potentially contains without having to try and balance the demands of a new school year, new classes, new teachers and new subjects.
He doesn't care that he has a small wardrobe and he doesn't care if his peers see him in the same clothes twice in one week. He honestly doesn't care so long as he's comfortable.
I wish I had that type of self-awareness. I don't. I just accept that I have to do things that I don't want to. I blindly accept all of them simultaneously and in total. All of them - big and small. Whether it's eating what's on my plate or working at a job that is miserably unsatisfying on multiple levels or wearing uncomfortable clothing. It's what I do. I wish that I had learned to say, "I can't do that right now" at some point in my life, but it was never an option. I think I would be happier if I were just a little bit selfish on a few occasions. I know my feet would be happier if I threw out that one pair of shoes that really hurt after about 30 minutes of wear and I know I would feel better if I didn't try to eat yogurt from time to time believing for some reason that it's supposed to be good for me when it typically leaves me feeling nauseous, but I won't. I'm stuck with the shoes and the containers of yogurt that sit in my fridge - all of it.
. . . not ot mention the drawer full of jeans and only two or three pair that I actually wear.
Sunday, July 17, 2011
Summer
I haven't written in a while. Summer is busy - and different.
That lovely languid roll of days that summer promises is not always welcome in our house. Our entire routine changes from something to distinguish one hour from the next to a big, open empty space that is tough to define. School bell schedules, classes, bus routes and everything that marks days with consistency and certainty disappear for a few months.
All the most obvious signs of structure are gone. We even sometimes go on vacation to places where anything might be expected. Most people love to go to new places, to stay in places they don't recognize and to experience places that are unfamiliar. I know that this is precisely what most people really love about summer, but for an Autistic boy it's a nerve-wracking disaster.
My son needs familiarity. He needs to know that things won't change too much. He needs certainty and consistency. This is difficult on vacations, but not impossible. Retaining some consistency is most difficult for those who don't need or want it as much. They wonder why we have to stick to mundane and pointless activities when there are so many other more interesting things to do. We forget that for my oldest son, sticking to his routine where possible means that he gets to sidestep some of the anxiety that goes with abandoning familiarity - which means he retains the ability to participate in some new experiences. Not all, but some.
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There are some activities that will simply never happen. For example, my oldest son will never get on a boat. No way! Not happening. I tried to take him canoeing once down a river that was literally as deep as his ankles. He was so nervous the entire time that he eventually threatened to get out and walk the rest of the trip. I let him - and he did. Once he was out of the boat, he was fine - walking down the river alongside the boat he was in control again despite that he was sometimes calf-deep in water. I've stopped asking him to go on whale watching expeditions or on ferries. I know better than to ask him about a cruise. It's just not worth it. Instead we schedule more sedate outings where he can participate as much or as little as he is comfortable and the rest of us can be entertained as well. We go historic places, we travel to family members towns and we spend time letting my son have his routine where he can. He needs his computer time to decompress and restore his brain to 'normal' after a day of 'unusual.'
Still and at the same time, he needs something to occupy his time and it needs to be something that is scheduled. Something that could be written down if need be - even a 'To-Do List" can be substituted if it's absolutely necessary - if there are no better options available.
It's not that he really wants to get anything accomplished. Instead, the issue that makes him anxious is that there is no schedule, no certainty to his day, no hard and fast, set-in-stone plans; so we have to establish some - anything.
Haircuts, going to the gym at a certain time, taking a book back to the library by a certain time, watering the lawn when the sun reaches a certain place in the sky and keeping dinnertime sacred and scheduled. All these activities mean that there is a rhythm to the day that is certain. It's the small rhythms that are important. the larger rhythms of life can be so less discernible and therefore create far less anxiety if they are not explicitly paid attention to all the time. It's the smaller pieces of time, those pieces that immediately surround us that he has to be sure about. If he can be sure about them, then the larger pieces will have been looked after well enough.
And ultimately, it's all about certainty.
That lovely languid roll of days that summer promises is not always welcome in our house. Our entire routine changes from something to distinguish one hour from the next to a big, open empty space that is tough to define. School bell schedules, classes, bus routes and everything that marks days with consistency and certainty disappear for a few months.
All the most obvious signs of structure are gone. We even sometimes go on vacation to places where anything might be expected. Most people love to go to new places, to stay in places they don't recognize and to experience places that are unfamiliar. I know that this is precisely what most people really love about summer, but for an Autistic boy it's a nerve-wracking disaster.
My son needs familiarity. He needs to know that things won't change too much. He needs certainty and consistency. This is difficult on vacations, but not impossible. Retaining some consistency is most difficult for those who don't need or want it as much. They wonder why we have to stick to mundane and pointless activities when there are so many other more interesting things to do. We forget that for my oldest son, sticking to his routine where possible means that he gets to sidestep some of the anxiety that goes with abandoning familiarity - which means he retains the ability to participate in some new experiences. Not all, but some.
There are some activities that will simply never happen. For example, my oldest son will never get on a boat. No way! Not happening. I tried to take him canoeing once down a river that was literally as deep as his ankles. He was so nervous the entire time that he eventually threatened to get out and walk the rest of the trip. I let him - and he did. Once he was out of the boat, he was fine - walking down the river alongside the boat he was in control again despite that he was sometimes calf-deep in water. I've stopped asking him to go on whale watching expeditions or on ferries. I know better than to ask him about a cruise. It's just not worth it. Instead we schedule more sedate outings where he can participate as much or as little as he is comfortable and the rest of us can be entertained as well. We go historic places, we travel to family members towns and we spend time letting my son have his routine where he can. He needs his computer time to decompress and restore his brain to 'normal' after a day of 'unusual.'
Still and at the same time, he needs something to occupy his time and it needs to be something that is scheduled. Something that could be written down if need be - even a 'To-Do List" can be substituted if it's absolutely necessary - if there are no better options available.
It's not that he really wants to get anything accomplished. Instead, the issue that makes him anxious is that there is no schedule, no certainty to his day, no hard and fast, set-in-stone plans; so we have to establish some - anything.
Haircuts, going to the gym at a certain time, taking a book back to the library by a certain time, watering the lawn when the sun reaches a certain place in the sky and keeping dinnertime sacred and scheduled. All these activities mean that there is a rhythm to the day that is certain. It's the small rhythms that are important. the larger rhythms of life can be so less discernible and therefore create far less anxiety if they are not explicitly paid attention to all the time. It's the smaller pieces of time, those pieces that immediately surround us that he has to be sure about. If he can be sure about them, then the larger pieces will have been looked after well enough.
And ultimately, it's all about certainty.
Thursday, March 31, 2011
TAKS Tension
All I asked was that he wear a clean shirt. Not one that he's worn, slept in and or retrieved from the laundry basket after a few days. This morning, of all mornings, needed to go well and it just didn't.
I feel horrible about it. Awful in fact, for not being intuitive enough to choose my battles more wisely, sad that I didn't have the ability to see the bigger perspective regarding the contents of the day (mine as well as his) before I decided to stab my battle flag into the ground and gulity because he may have a terrible day at school in part because I wouldn't let him simply wear a dirty shirt to school on practice TAKS day.
My son has never been overly concerned about what he wears. Well, let me explain that another way. He is not concerned about the same criteria that I might be focused on. He has a set of 'acceptable' shirts that he prefers. Delineating a shirt 'acceptable' or 'comfortable' makes it simultaneously impossible for my son to consider wearing one of the alternative shirts that quietly wait in his dresser drawer. In the most basic terms, he flatly refuses to wear any others. He would rather miss school than wear a alternative shirt - which is saying quite a bit if you understand how important his daily school routine is. This and his shirt routine must coexist.
As long as he's got one of his 'acceptable' shirts - he's fine. He doesn't care if it's dirty, paint-stained from Art class, damp, smelly, wrinkled or some other form of unclean that I haven't considered. If it's one of the good ones - it's all good. At least as far as he's concerned.
For me, it's different.
I typically insist that he wear a clean shirt. It's simple really. One clean shirt each and every new day. He has five or six in his acceptable stack so finding one that is both clean and acceptable shouldn't be a problem. Except that yesterday it was.
I've been busy. For some reason, I forgot to ask if he had a clean shirt before he went to bed last night. Such a minor oversight and one with such faar-reaching potential to create chaos. My son's whole day could be irreversibly shattered - all because of a simple laundry oversight. But nothing about this is simple. He can't just cope, wear a different shirt, choose and alternative, make due for a day, or deal with some textile outlier for the sake of making either his life, my life or the lives of the other residents in the house any easier. He doesn't seem to have the resilience and or capacity to understand that just a little flexibilty provides greater control.
Because; a.) Control is black and white. It either is or it isn't. b.) We all have criteria. Just because eveyone doesn't understand it, doesn't make it irrelevent. and c.) It's not my shirt, my day or my TAKS test.
I lost sight of what was important; getting my son through a diffficult day intact and with a sense of accomplishment and maybe even success. I lost sight of the big picture.
My son didn't. He kept his focus and fought for it even at the risk of placing his concentration in jeopardy on a very important day. But something tells me that my son will get over this set-back much sooner than I will.
My son has never been overly concerned about what he wears. Well, let me explain that another way. He is not concerned about the same criteria that I might be focused on. He has a set of 'acceptable' shirts that he prefers. Delineating a shirt 'acceptable' or 'comfortable' makes it simultaneously impossible for my son to consider wearing one of the alternative shirts that quietly wait in his dresser drawer. In the most basic terms, he flatly refuses to wear any others. He would rather miss school than wear a alternative shirt - which is saying quite a bit if you understand how important his daily school routine is. This and his shirt routine must coexist.
As long as he's got one of his 'acceptable' shirts - he's fine. He doesn't care if it's dirty, paint-stained from Art class, damp, smelly, wrinkled or some other form of unclean that I haven't considered. If it's one of the good ones - it's all good. At least as far as he's concerned.
For me, it's different.
I typically insist that he wear a clean shirt. It's simple really. One clean shirt each and every new day. He has five or six in his acceptable stack so finding one that is both clean and acceptable shouldn't be a problem. Except that yesterday it was.
I've been busy. For some reason, I forgot to ask if he had a clean shirt before he went to bed last night. Such a minor oversight and one with such faar-reaching potential to create chaos. My son's whole day could be irreversibly shattered - all because of a simple laundry oversight. But nothing about this is simple. He can't just cope, wear a different shirt, choose and alternative, make due for a day, or deal with some textile outlier for the sake of making either his life, my life or the lives of the other residents in the house any easier. He doesn't seem to have the resilience and or capacity to understand that just a little flexibilty provides greater control.
Because; a.) Control is black and white. It either is or it isn't. b.) We all have criteria. Just because eveyone doesn't understand it, doesn't make it irrelevent. and c.) It's not my shirt, my day or my TAKS test.
I lost sight of what was important; getting my son through a diffficult day intact and with a sense of accomplishment and maybe even success. I lost sight of the big picture.
My son didn't. He kept his focus and fought for it even at the risk of placing his concentration in jeopardy on a very important day. But something tells me that my son will get over this set-back much sooner than I will.
Tuesday, March 29, 2011
Lost Trust
Trust is a huge issue for any of us. For my son, it's the only issue. Trust means that information is correct. It means that events are predictable. It means that everything else might also be accurate - but not necessarily. So when it's gone. It's completely gone an almsot impossible to reinstate.
As well, there are no grey areas in language. My son believes that people should either choose to say something that they literally mean - or not. Suggestion, alluding to or inferring information or ideas and thoughts simply makes no sense to him. He takes most of what he hears as literal statements of truth.
This is where the trouble starts and stops.
Last semester, one of my son's young teachers used a derrogetory name toward another student in one of my son's classes. The comment was relatively benign, not directed toward my son and was in keeping with common peer language used between students. It was NOT appropriate for a teacher to use.
I knew nothing of the comment or statement for weeks. He said nothing, divulged nothing and asked nothing but his grade in that particular class began to suffer. He was failing one of his favorite classes. That he was failing was surprise enough - but in his favorite class as well as the one he's most proud to be and excel in (because it has no accomodations) was a triple quandry.
In an effort to help him and discover what had changed to bring about this new pattern of failure I asked, "Is everything okay in ---- class?" My son matter of factly told me what had happened and I was shocked; both at his detached attitude toward it and my intense and instant rage toward the same.
Later, when I had calmed down some I asked a few more questions. My son answered them all with the same technical expertise that I love so much about him and also said, "I just can't listen to her (his teacher's) voice any more.
So this simple and seemingly inert comment made toward one student - not even my own - had in seconds deteriorated the entire spectrum of trust that both my son had worked to establish on her behalf and that the teacher had unknowingly created on his behalf.
She said one slightly cruel, completely inappropriate and very immature word . . . and every shred of trust, security and integrity were simultaneously lost.
My son could no longer place value on anything she said or might say regardless of what it concerned; schoolwork, casual conversations, necessary instruction. It was all gone.
I'm sure the teacher did not intentionally destroy the faith of my student and would never do so intentionally toward any other student. But this is the difficult part of being in a classroom with so many different students. You never know how what you say is going to affect each and every person in your audience. With so many cultures, backgrounds and social elements in the mix, guessing the outcome of every single action would be practically impossible. Even under the best circumstances and removing every possible mis-step I doubt that any teacher could eliminate every negative interpretation of every word and action he or she chose to display.
Further, my son's reaction should not be restricted or assigned to the fact that he has Asperger's. Nobody enjoys being treated poorly - ever. No matter in jest, fun, by peers, superiors or whomever. Asperger's had nothing to do with this, the teacher did. She made a poor choice and lost credibility. Everyone's done something similar at one time or another.
The part about this whole scenario that Asperger's did have something to do with was my son's ability to tell me exactly what happened and then link his reaction to a specific moment in time where his perception of his teacher shifted. These are facts and therefore easy to determine using logical means. I asked, he told. he wasn't afraid of social retributuion because it's a very difficult concept for him to understand. He also didn't consider peer perceptions. This is another area that even if he did completely get it - he wouldn't really care.
Since he told me about his teacher's comment, my son's grades have improved. I was able to talk to him and the administrators at his school to find a way to try and reinstate some integrity for this young teacher, provide a learning experience to her and allow my son to find a path around this huge obstacle that trust creates or removes.
I wonder how many students were affected who just didn't say anything - to anyone.
This is where the trouble starts and stops.
Last semester, one of my son's young teachers used a derrogetory name toward another student in one of my son's classes. The comment was relatively benign, not directed toward my son and was in keeping with common peer language used between students. It was NOT appropriate for a teacher to use.
I knew nothing of the comment or statement for weeks. He said nothing, divulged nothing and asked nothing but his grade in that particular class began to suffer. He was failing one of his favorite classes. That he was failing was surprise enough - but in his favorite class as well as the one he's most proud to be and excel in (because it has no accomodations) was a triple quandry.
In an effort to help him and discover what had changed to bring about this new pattern of failure I asked, "Is everything okay in ---- class?" My son matter of factly told me what had happened and I was shocked; both at his detached attitude toward it and my intense and instant rage toward the same.
Later, when I had calmed down some I asked a few more questions. My son answered them all with the same technical expertise that I love so much about him and also said, "I just can't listen to her (his teacher's) voice any more.
So this simple and seemingly inert comment made toward one student - not even my own - had in seconds deteriorated the entire spectrum of trust that both my son had worked to establish on her behalf and that the teacher had unknowingly created on his behalf.
She said one slightly cruel, completely inappropriate and very immature word . . . and every shred of trust, security and integrity were simultaneously lost.
My son could no longer place value on anything she said or might say regardless of what it concerned; schoolwork, casual conversations, necessary instruction. It was all gone.
I'm sure the teacher did not intentionally destroy the faith of my student and would never do so intentionally toward any other student. But this is the difficult part of being in a classroom with so many different students. You never know how what you say is going to affect each and every person in your audience. With so many cultures, backgrounds and social elements in the mix, guessing the outcome of every single action would be practically impossible. Even under the best circumstances and removing every possible mis-step I doubt that any teacher could eliminate every negative interpretation of every word and action he or she chose to display.
Further, my son's reaction should not be restricted or assigned to the fact that he has Asperger's. Nobody enjoys being treated poorly - ever. No matter in jest, fun, by peers, superiors or whomever. Asperger's had nothing to do with this, the teacher did. She made a poor choice and lost credibility. Everyone's done something similar at one time or another.
The part about this whole scenario that Asperger's did have something to do with was my son's ability to tell me exactly what happened and then link his reaction to a specific moment in time where his perception of his teacher shifted. These are facts and therefore easy to determine using logical means. I asked, he told. he wasn't afraid of social retributuion because it's a very difficult concept for him to understand. He also didn't consider peer perceptions. This is another area that even if he did completely get it - he wouldn't really care.
Since he told me about his teacher's comment, my son's grades have improved. I was able to talk to him and the administrators at his school to find a way to try and reinstate some integrity for this young teacher, provide a learning experience to her and allow my son to find a path around this huge obstacle that trust creates or removes.
I wonder how many students were affected who just didn't say anything - to anyone.
Thursday, March 10, 2011
Autism Speaks Transition Tool Kit
What kind of tool kit could possibly prepare me to deal with a loved child who has the possibility of schizophrenia to look forward to?
There is nothing.
However, Autism Speaks has recently assembled and placed online a fairly comprehensive Autism Tool Kit for children and families of children affected by Autism who are between the ages of 14 and 22. I might find helpful - or at least parts of it.
If nothing more, the toolkit will at least remind me that there are resources that I know of that are supposed to provide help, advice and services that I might need one day.
It's a little short in the legal advice area(s), but - nothing's perfect.
You may find it helpful too.
You can download the Toolkit for yourself here Autsim Speaks Transition Toolkit
There is nothing.
However, Autism Speaks has recently assembled and placed online a fairly comprehensive Autism Tool Kit for children and families of children affected by Autism who are between the ages of 14 and 22. I might find helpful - or at least parts of it.
If nothing more, the toolkit will at least remind me that there are resources that I know of that are supposed to provide help, advice and services that I might need one day.
It's a little short in the legal advice area(s), but - nothing's perfect.
You may find it helpful too.
You can download the Toolkit for yourself here Autsim Speaks Transition Toolkit
Is it Normal?
This is the question my son asks me more than any other.
"Is it normal?"
No matter the subject or criteria, he needs to know; to establish a baseline, to know he's not the staggeringly different version of a human the he believes he might be because other kids have told him so.
Isn't it just vaguely but profoundly sad that he is so aware of the fact that he can't always tell the difference and most people take similar situations for granted as 'normal'? At least he's learning that maybe he can't trust the entire population of opinions that are launched at him every day by his peers.
What is more sad is that I'm usually so hesitant to describe anything as being 'normal.' Yes, there are behaviors that are more common, traits that are more popular and ideas that are more widely accepted. But 'Normal"? What is that? Really? Down at the foundation of the definition, what is "normal"? I tell him there isn't a 'normal' where Asperger's is concerned because he's so much better than 'normal.' He's definitely not normal. He's so much better.
I have two sons. The oldest has Asperger's and the youngest doesn't. I would hesitate a long time before I called either one of them, "Normal." Unless, of course, you are talking about the most basic human traits; two arms, two legs, torso, head, walking, talking, eating, etc. Neither one of my sons fits in the 'normal' criteria.
My oldest has always been more defiantly different than others. He has consistently challenged my authority, my sensibility and intelligence. He doesn't see a problem with this. He also doesn't understand how it makes people feel to be subjected to it. It seems normal to him that people should simply say what they think; no more and no less. Why would anyone need something different? Shouldn't this be 'normal'?
My youngest, like many siblings of those with Asperger's is wise beyond his years - sometimes beyond mine. He is mature for his age as he tries hard to be the older brother and teach my older son to navigate the social land mines of high school. As well, he is more helpless as he vies for the extremely thin bands of attention that his Mother can provide due to the continuous needs of his older brother. Add to that I'm a single parent and the bands of time become even narrower. Its' difficult for both of us - for all three of us. He wants to be patient but finds it hard in the less sure environment of '13-ville.' He is tolerant and accepting yet rigid and needy. He is a contemplative perfectionist. He is definitely not a normal 13 year old.
And here I try so hard to be a normal parent. Why? Nothing about any of this is normal. It only seems normal to us because it's the only life we know.
"Is it normal?"
No matter the subject or criteria, he needs to know; to establish a baseline, to know he's not the staggeringly different version of a human the he believes he might be because other kids have told him so.
What is more sad is that I'm usually so hesitant to describe anything as being 'normal.' Yes, there are behaviors that are more common, traits that are more popular and ideas that are more widely accepted. But 'Normal"? What is that? Really? Down at the foundation of the definition, what is "normal"? I tell him there isn't a 'normal' where Asperger's is concerned because he's so much better than 'normal.' He's definitely not normal. He's so much better.
I have two sons. The oldest has Asperger's and the youngest doesn't. I would hesitate a long time before I called either one of them, "Normal." Unless, of course, you are talking about the most basic human traits; two arms, two legs, torso, head, walking, talking, eating, etc. Neither one of my sons fits in the 'normal' criteria.
My oldest has always been more defiantly different than others. He has consistently challenged my authority, my sensibility and intelligence. He doesn't see a problem with this. He also doesn't understand how it makes people feel to be subjected to it. It seems normal to him that people should simply say what they think; no more and no less. Why would anyone need something different? Shouldn't this be 'normal'?
My youngest, like many siblings of those with Asperger's is wise beyond his years - sometimes beyond mine. He is mature for his age as he tries hard to be the older brother and teach my older son to navigate the social land mines of high school. As well, he is more helpless as he vies for the extremely thin bands of attention that his Mother can provide due to the continuous needs of his older brother. Add to that I'm a single parent and the bands of time become even narrower. Its' difficult for both of us - for all three of us. He wants to be patient but finds it hard in the less sure environment of '13-ville.' He is tolerant and accepting yet rigid and needy. He is a contemplative perfectionist. He is definitely not a normal 13 year old.
And here I try so hard to be a normal parent. Why? Nothing about any of this is normal. It only seems normal to us because it's the only life we know.
Thursday, February 10, 2011
The falicy of "Parenthood"
I started this post a few weeks ago. I began because I had been watching a popular prime time television show about a family where one of the members has Asperger's. I have mixed feelings about this show. I have from the start. While I think it's great that one of the major networks is attempting to address this really troublesome and potentially dramatic and devastating condition, I also believe that, as usual in films, the whole pretense is so entirely scripted that to those of us who actually live this type of life every day in reality and not on a television set - it's a little insulting.
As with any reality that becomes fit for movie or television screen, some details are dead-on accurate and some are simply miles off target.
For example, sometimes the character that plays the family member with Asperger's gets the literal and vacant comments and awkward social interactions and language interpretations just right. There is an ethereal quality to his lack of concentration and his ability to capture and emit what it's like to live with someone who is more interested in what's going on inside his head than outside it in his environment that is remarkably correct. At the same time, huge discrepancies are more common. The Father will try to reason with his son - and it will work. The Mother will pat her son on the head and the son won't make some sort of guttural noise that means "I don't like people touching me - especially on my head" sound that everyone understands because they've been trying to learn this child's language for their whole lives and still they're not sure. The child will be able to sit down at a dinner table with a large group of family members in an overcrowded and conventionally acceptable holiday room where strangers are also present and it's noisy. And without being distracted by the strangers, intolerant of all the noise and comfortable with the closeness of the group, he sits and eats quietly. Nobody makes him a special meal because he won't eat most of what's on the table. Nobody has to remember that he doesn't like the sound of chewing so they have to turn the music on. Nobody has to remind the child that it's not polite to reach for something on someone else's plate. Nobody has to bring him back to the table twice because he's gone to check the weather. Nobody has to beg him to eat when there are other activities that are so much more interesting.
For most of us who live with children and or adults affected by Asperger's these types of normal behaviors mixed in with those more definitively 'Aspergian' are simply dreams. Every once in a while, our child will make an enormous leap of understanding about a topic that we've been working on with our children for what seems like forever and what is probably closer to years and we melt in the happiness and disbelief that our child's progress creates. Usually, it's just in time. It happens just as we're beginning to wonder if he or she will ever understand what we believe we need them to.
In one of the shows, the family was having company for dinner. As I would think typical, the character affected with Asperger's makes comments that are inappropriate but certainly not as inappropriate as those my own son has made or in public. The parent's reaction is one of surprise and horror. Really? At this point? The character is an older pre-teen and still his own parent (characters) haven't accepted him for who he is or learned to deal with these types of situations by doing a little pre-company work. Like explaining to their guests beforehand that their child has Asperger's and helping them to be prepared? Or better yet, they might actually talk to their child to prepare him or her for the company.
Yes, I know it's a beating. I have actually had to have this discussion so many times it's not funny. For the most part, people don't know what Asperger's is. Imagine! In this day and age. They know of it, but they have absolutely no idea what the label means. It's a total blank because they actually don't want to know..So not only do I have to warn them, I have to educate them. It's a painful process and one that can sound like I'm making excuses for my son when I'm not. I won't.
I guess the last straw, the reason that I was finally compelled to write about my concerns, was that on the last episode I watched, the Mother had an issue with the Mother of her child's peer and in her attempt to solve the issue she invited the other Mother over for sushi and wine while their respective children played - with the occupational aide - and it actually happened; without interruption, without incident and without the need for a complete re-think in strategy or complete cancellation after the event had begun. The Mothers were quietly eating, talking and drinking and the kids were playing - completely occupied with the same task and social engagement as their Mothers.
What I found remarkable was the network expects us to believe that this Mother, the one with the child with Asperger's had time to go shopping, make sushi, clean the house and do her hair. And that the other character (the son) wasn't having a fit about his shirt which was all of a sudden all wrong for no apparent reason, or that he might have simply decided not to participate in the scheduled event and would not be persuaded to change his mind by any means. Or, that the other child-character (also an Aspie) was able to come into a new environment and work with another person (the aide character) without any issues. That neither child suddenly had an issue with anything - like deciding to take his clothes off or going to the kitchen to get a snack or simply abruptly loosing interest in his or her playmate and walking away without any comment to do something more interesting, less social and likely something that would provide hours of distraction to his Mother - who was also able to enjoy her company for at least five minutes without interruption and fix everything with wine and sushi.
Life just isn't like that for us who live in the real Asperger's world. It never has been. It never will be and to imagine it seems an insult. Life with a child affected by Asperger's is a lonely and very unpredictable place. You can try to include normal activities, but for the most part, you have to be prepared for the fact that they may not actually get accomplished, be enjoyable or work out the way you planned. Eventually you will learn not to expect too much and to be happy and surprised when things do work out - when your child has a good day.
Maybe if the character's husband left her because he just couldn't handle raising a child who was different and she was left having to work instead of making sushi, shopping for wine and hiring occupational therapists the show would seem more accurate. Maybe if not so many episodes had happy endings; maybe - maybe if the siblings didn't always have the maturity of a 40 year-old as teenagers . . . maybe if there wasn't a script.
Life with Asperger's is like having a script in a language you can read and or understand and trying to put on a show anyway. It's chaotic and unpredictable. This is what they should attempt to portray because this is how my life really is - and not just mine. This is as true for my son with Asperger's as it is for my son who is not affected. It's true for our family members when they visit and it's true for everyone who knows us.
I've NEVER had an afternoon where I had the time to invite a friend in for wine and sushi.
Are they kidding?
As with any reality that becomes fit for movie or television screen, some details are dead-on accurate and some are simply miles off target.
For example, sometimes the character that plays the family member with Asperger's gets the literal and vacant comments and awkward social interactions and language interpretations just right. There is an ethereal quality to his lack of concentration and his ability to capture and emit what it's like to live with someone who is more interested in what's going on inside his head than outside it in his environment that is remarkably correct. At the same time, huge discrepancies are more common. The Father will try to reason with his son - and it will work. The Mother will pat her son on the head and the son won't make some sort of guttural noise that means "I don't like people touching me - especially on my head" sound that everyone understands because they've been trying to learn this child's language for their whole lives and still they're not sure. The child will be able to sit down at a dinner table with a large group of family members in an overcrowded and conventionally acceptable holiday room where strangers are also present and it's noisy. And without being distracted by the strangers, intolerant of all the noise and comfortable with the closeness of the group, he sits and eats quietly. Nobody makes him a special meal because he won't eat most of what's on the table. Nobody has to remember that he doesn't like the sound of chewing so they have to turn the music on. Nobody has to remind the child that it's not polite to reach for something on someone else's plate. Nobody has to bring him back to the table twice because he's gone to check the weather. Nobody has to beg him to eat when there are other activities that are so much more interesting.
For most of us who live with children and or adults affected by Asperger's these types of normal behaviors mixed in with those more definitively 'Aspergian' are simply dreams. Every once in a while, our child will make an enormous leap of understanding about a topic that we've been working on with our children for what seems like forever and what is probably closer to years and we melt in the happiness and disbelief that our child's progress creates. Usually, it's just in time. It happens just as we're beginning to wonder if he or she will ever understand what we believe we need them to.
In one of the shows, the family was having company for dinner. As I would think typical, the character affected with Asperger's makes comments that are inappropriate but certainly not as inappropriate as those my own son has made or in public. The parent's reaction is one of surprise and horror. Really? At this point? The character is an older pre-teen and still his own parent (characters) haven't accepted him for who he is or learned to deal with these types of situations by doing a little pre-company work. Like explaining to their guests beforehand that their child has Asperger's and helping them to be prepared? Or better yet, they might actually talk to their child to prepare him or her for the company.
Yes, I know it's a beating. I have actually had to have this discussion so many times it's not funny. For the most part, people don't know what Asperger's is. Imagine! In this day and age. They know of it, but they have absolutely no idea what the label means. It's a total blank because they actually don't want to know..So not only do I have to warn them, I have to educate them. It's a painful process and one that can sound like I'm making excuses for my son when I'm not. I won't.
I guess the last straw, the reason that I was finally compelled to write about my concerns, was that on the last episode I watched, the Mother had an issue with the Mother of her child's peer and in her attempt to solve the issue she invited the other Mother over for sushi and wine while their respective children played - with the occupational aide - and it actually happened; without interruption, without incident and without the need for a complete re-think in strategy or complete cancellation after the event had begun. The Mothers were quietly eating, talking and drinking and the kids were playing - completely occupied with the same task and social engagement as their Mothers.
What I found remarkable was the network expects us to believe that this Mother, the one with the child with Asperger's had time to go shopping, make sushi, clean the house and do her hair. And that the other character (the son) wasn't having a fit about his shirt which was all of a sudden all wrong for no apparent reason, or that he might have simply decided not to participate in the scheduled event and would not be persuaded to change his mind by any means. Or, that the other child-character (also an Aspie) was able to come into a new environment and work with another person (the aide character) without any issues. That neither child suddenly had an issue with anything - like deciding to take his clothes off or going to the kitchen to get a snack or simply abruptly loosing interest in his or her playmate and walking away without any comment to do something more interesting, less social and likely something that would provide hours of distraction to his Mother - who was also able to enjoy her company for at least five minutes without interruption and fix everything with wine and sushi.
Life just isn't like that for us who live in the real Asperger's world. It never has been. It never will be and to imagine it seems an insult. Life with a child affected by Asperger's is a lonely and very unpredictable place. You can try to include normal activities, but for the most part, you have to be prepared for the fact that they may not actually get accomplished, be enjoyable or work out the way you planned. Eventually you will learn not to expect too much and to be happy and surprised when things do work out - when your child has a good day.
Maybe if the character's husband left her because he just couldn't handle raising a child who was different and she was left having to work instead of making sushi, shopping for wine and hiring occupational therapists the show would seem more accurate. Maybe if not so many episodes had happy endings; maybe - maybe if the siblings didn't always have the maturity of a 40 year-old as teenagers . . . maybe if there wasn't a script.
Life with Asperger's is like having a script in a language you can read and or understand and trying to put on a show anyway. It's chaotic and unpredictable. This is what they should attempt to portray because this is how my life really is - and not just mine. This is as true for my son with Asperger's as it is for my son who is not affected. It's true for our family members when they visit and it's true for everyone who knows us.
I've NEVER had an afternoon where I had the time to invite a friend in for wine and sushi.
Are they kidding?
Wednesday, January 26, 2011
Uncertainty
I lost my job last week. It's nerve-wracking on a good day and to most rational people. However, in the current economy, it's downright frightening. I dreaded having to tell my friends. I hated that I had to tell anyone. Most, I really didn't want to tell my oldest son. I knew he would simply have a much harder time with this than the rest of us would - because it's such an uncertain situation and he needs to be sure - about everything.
It will be hard for both of us because I'll grow tired of answering questions that I have no answers for and he will ask more the longer my unemployement goes on. They will sound like, "When will you get a new job?" or "Where will you find a job?" and "How will be pay for what we need?"
How can I explain that I simply don't know the answers to these questions no matter how much I wish I did? How can I possibly try to convince him that everything will be okay when I have no tangible proof to that effect?
He will ask more and more frequently as time goes on and trying to ask him not to and explain why will not help at all. As he both becomes more anxious and attempts to immerse himself in his trouble tyring to find a way to deal with an untenable situation he'll have to ask. He's jus tnot capable of not asking - because things change and you can never be sure when or why. We have plenty of evidence for that, don't we?
With each day that passes, he will become less and less comfortable. He'll ask more and more often. There's no getting around it. I know he doesn't mean to irritate me or point out exactly why I should be stressed
I know he means well and will be essentially thinking out loud as he continues to ask these same quesions over and over. But to me it will sound like, "Don't you know what you're doing? Anyone else would have a new job by now." or "Are you sure you're worth hiring?"
At the same time he wonders if I'm doing all I can, he'll need to know that I'm still here for him despite that I can no longer be defined by any employment. If something so fundamental can change then surely the possibility exists that other foundational characteristics can change without warning too. He'll want to know that I'm not going to focus so intently on my job search that I can no longer pay attention to him or his brother. Or maybe I'll just stop paying attention for some other reason that makes just as little sense.
He'll want to make sure I'm remaining as balanced as possible.
He'll check on me during the day from his high school classroom by sending texts, "You okay?" He's such a sweetheart. How is it the kid with Asperger's is the one who knows that this is the correct way to behave toward someone who they can't help, but they wish they could?
It will be hard for both of us because I'll grow tired of answering questions that I have no answers for and he will ask more the longer my unemployement goes on. They will sound like, "When will you get a new job?" or "Where will you find a job?" and "How will be pay for what we need?"
How can I explain that I simply don't know the answers to these questions no matter how much I wish I did? How can I possibly try to convince him that everything will be okay when I have no tangible proof to that effect?
He will ask more and more frequently as time goes on and trying to ask him not to and explain why will not help at all. As he both becomes more anxious and attempts to immerse himself in his trouble tyring to find a way to deal with an untenable situation he'll have to ask. He's jus tnot capable of not asking - because things change and you can never be sure when or why. We have plenty of evidence for that, don't we?
With each day that passes, he will become less and less comfortable. He'll ask more and more often. There's no getting around it. I know he doesn't mean to irritate me or point out exactly why I should be stressed
I know he means well and will be essentially thinking out loud as he continues to ask these same quesions over and over. But to me it will sound like, "Don't you know what you're doing? Anyone else would have a new job by now." or "Are you sure you're worth hiring?"
At the same time he wonders if I'm doing all I can, he'll need to know that I'm still here for him despite that I can no longer be defined by any employment. If something so fundamental can change then surely the possibility exists that other foundational characteristics can change without warning too. He'll want to know that I'm not going to focus so intently on my job search that I can no longer pay attention to him or his brother. Or maybe I'll just stop paying attention for some other reason that makes just as little sense.
He'll want to make sure I'm remaining as balanced as possible.
He'll check on me during the day from his high school classroom by sending texts, "You okay?" He's such a sweetheart. How is it the kid with Asperger's is the one who knows that this is the correct way to behave toward someone who they can't help, but they wish they could?
Saturday, January 15, 2011
New Year - 24 times?
New Year's is a difficult concept for my son. It's more than just the passage of time, it's realizing that the concept of time and the way we measure it is completely inept and inaccurate. "Time" for my son - just is. It's not something that is different in one place from what it is in another place.
Of course, he understands that clocks measure time really don't do a good job of it. More, they serve as very poor yet tangible markers of the passage of time from past to present and then to future.
The New Year comes in parcels according to the boundaries of an imaginary line; the GMT (human drawn lines which make no sense). The line isn't straight, and follows arbitrary political or geographic boundaries - also determined by people. And while my son accept this, he knows it's not true. He goes along with the collective lunacy of the world's population and chooses to celebrate New Year's at the moment that it arrives in our particular time zone - as opposed to when it really arrives which is impossible to determine on a human level. Someone would have to know when the Earth started orbiting the Sun - the exact moment. Or better yet, the exact point at which 'time' began.
As far as my son is concerned, time envelopes the world. It actually happens all at once and simultaneously. It's people who have it wrong. The sun doesn't set time. Time simply exists outside the confines or constructs of humans and their relationship with Earth.
Celebrating New Years is no different than choosing to celebrate any other human defined holiday like Christmas or Memorial Day. But with New Year's the fact that this holiday is so conspicuously celebrated at individual times around the globe is so much more pronounced and therefore, so much more ridiculous for my son.
I've tried explaining it but I don't think I will ever be able to transform subjective logic into believable science.
So, my son has adapted. He chooses to celebrate New Year's at the time that it occurs when it reaches the US. "The Ball drops at 11 o'clock"
Of course, he understands that clocks measure time really don't do a good job of it. More, they serve as very poor yet tangible markers of the passage of time from past to present and then to future.
The New Year comes in parcels according to the boundaries of an imaginary line; the GMT (human drawn lines which make no sense). The line isn't straight, and follows arbitrary political or geographic boundaries - also determined by people. And while my son accept this, he knows it's not true. He goes along with the collective lunacy of the world's population and chooses to celebrate New Year's at the moment that it arrives in our particular time zone - as opposed to when it really arrives which is impossible to determine on a human level. Someone would have to know when the Earth started orbiting the Sun - the exact moment. Or better yet, the exact point at which 'time' began.
As far as my son is concerned, time envelopes the world. It actually happens all at once and simultaneously. It's people who have it wrong. The sun doesn't set time. Time simply exists outside the confines or constructs of humans and their relationship with Earth.
Celebrating New Years is no different than choosing to celebrate any other human defined holiday like Christmas or Memorial Day. But with New Year's the fact that this holiday is so conspicuously celebrated at individual times around the globe is so much more pronounced and therefore, so much more ridiculous for my son.
I've tried explaining it but I don't think I will ever be able to transform subjective logic into believable science.
So, my son has adapted. He chooses to celebrate New Year's at the time that it occurs when it reaches the US. "The Ball drops at 11 o'clock"
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