- Editorial Note:This essay started out as a FB Status by my friend Kathleen. It resonated deeply with me, because she is me. We are the same. Our lives are a parallel universe, that most people don't know anything about. For those of you who don't live it ...this is the world of an Aspergers Mom. By getting to know her ...you will be getting to know our universe.By Kathleen JohnsonI wish for one day you could be me. I wish for one day you could listen to the barrage of concerns I listen to without the ability to alleviate them...from the way the schools’ cafeteria is cheating him out of 33.5 cents every time he buys a frozen yogurt, because it does not accurately reflect the amount they are reporting to sell him. On to the grades that are entered incorrectly for him by one particular teacher, who is certainly out to keep in high school forever.I wish for one day you could feel the anxiety that begins to boil up in me as I listen to complaint after complaint of how the world is against him. One very tiny thing to you or me, is the end of the world to him. Like the way people look at him when they walk by. To the space he has to share which is “not his fault!” Everything is "not his fault!"A timer set him off this morning. The timer (he fought me on) -that he swore up and down he didn’t want in his bathroom. “Timing showers is ‘stupid’” This same timer is why he is pissed off they took out of his bathroom for “no reason.” They had to walk by their shower timer to get his. It's a conspiracy of sorts. Everyone is always conspiring against him. Never mind that he hasn’t noticed the timer has been out of his bathroom for a week. He noticed it now, and that was enough to set his day up for opposition.I wish for one day you could experience what it is like to have the concerns about his future as I do. When something so small as a bathroom timer can upset his entire day, how is he going to react when they cut him off on the freeway? Or when a co-worker blames him for speaking inappropriately and the boss confronts him?I worry about how he will live on his own. Who will explain things to him such as the rent is due at the BEGINNING of the month, and not the end, so when he doesn’t understand, he doesn’t automatically assume the landlord is out to take advantage of him. The police or judges certainly aren’t going to take his “disability” under consideration when there's a misunderstanding. His own father can’t do that.His lack of understanding is a real problem for him. He finds it difficult to follow simple rules in our home. They escape him. He isn’t present in the moment enough to follow them. When called on his “inability” to follow the rules, he can’t explain himself sufficiently or quick enough. I get his frustration. I GET IT!Have you ever considered that the very thing that drives you or I crazy about him is what creates his frustration and anger?Consider for a moment that you are driving fast to rush a lady in labor to the hospital. You are pulled over by the authorities for violating the speed limit. You are so frazzled, that you can’t find your words to tell the officer that there is a woman in your car in labor, but you KNOW there is a woman about to give birth in your backseat. The windows are tinted and she isn’t making any noise. You try to roll down your window to “show” the officer the situation since you can’t articulate it. The officer takes it as you trying to reach for a weapon. Immediately, he gets aggressive with you and pulls you out of the car on the drivers side. In an instant you are face planted to the side of your car, getting frisked and handcuffed.
Meanwhile, you KNOW this woman is in the back of the car about to spit an 8lb baby out of her vagina and bloody up your new car. You start to struggle and scream because if only they let you go, you could show the officer. However, he is telling you to be quiet. His perception of the situation is his reality and you are powerless to change that! His partner begins to search the vehicle and he sees the pregnant woman in distress. All of a sudden the officer communicates this to his partner. The officer now knows what you know. He releases you and actually even escorts you to the hospital. All the while you may appreciate the understanding, but your adrenaline is running. You're PISSED OFF because you were trying to tell him that in first place. You just where just too upset in the moment, to be able to articulate it. The words wouldn’t come to you. You thought everyone else should know what was in your head.THIS is what it is like for him every single day! This is what communication looks like in my home. Always a misunderstanding -an expectation that he doesn't meet. He should do better despite his ability level.If you walked in his shoes, would you blame yourself for being so emotionally charged to not be able to articulate the specific circumstances regarding the woman in labor? Yet we expect him, the kid who lives in THIS FRAZZLED state of being to be able to do articulate his thoughts and feelings appropriately, instantaneously...everyday!HE ISN’T TYPICAL! Stop comparing him to other kids his age. Stop comparing him to other kids younger than him. Stop comparing him to yourself! Honor the fact that our child is different. Don’t tell them to see himself as the equal to his peers, or siblings. He isn’t.
Every individual should be treated based on what THEY need.My child has Aspergers. In his mind, your typical child is at an unfair advantage when he deals with him. His disability is invisible to the world, but that doesn't mean that it doesn't exist. It is REAL. His disability is real. I am sick and tired of the perception that I make excuses for him. I am trying to educate ...not excuse. Autism is the invisible reason for many of his behaviors.Imagine ...I have to explain this and educate his own father almost daily! By the time I get to explaining this over and over again, those of you in the outside world, may see my frustration. I may not be all goodness and light when I am exasperated.Teachers, friends and relatives -I am sorry he treats you inappropriately, doesn’t listen to you, or give you the respect as an adult that you think that he should. It makes me sad that I have not been able to install that in him as a parent. But I get it ...I get where he is coming from. It is difficult to get him to trust us, his own parents enough to listen to us.I mean, think about this. The people who brought him into this world weren’t given an instruction manual for him. We are learning as we go. We made mistakes while raising him especially, before we knew he had autism. There were MANY days when we were that police officer who wasn't hearing what he was trying to tell us. That miscommunication instilled a mistrust in him. His self talk became -if the people who are supposed to love me and protect me can’t understand me, I can’t trust that anyone will. I need to depend on myself. So he built up a barricade -a fire wall.He may never trust enough to listen to what you say. Don’t make that mean he is disrespectful or that his behavior is willful. He will likely bark at you, that comes from the years of being barked at by others. It's instinctive, fight or flight behavior. His frustration comes out as anger. He feels like he is constantly treated unfairly by the world. So, yes, he may blurt things out that make you cringe, give you a knee jerk reaction, or make you want to slap the shit out of him. I understand. I get that too. But please understand he has no filter, no political correctness and at this point, after everything he has been through, he is completely desensitized to judgment by you or anyone else. He is just trying to survive.When he thinks something, he says it. He isn’t being mean or rude. He just isn’t concerned nor does he even realize that other people actually have self talk (filters) before they say something aloud. He thinks it, speaks it and then suffers the ramification of it. No. He doesn’t connect that behavior with anything he needs to adjust, so therefore, he may never learn from the consequences he experiences.Believe you me, I wish I could have had a greater parental impact on him. I have been beating my head against this brick wall for 15 years.IF you really knew me ...you would understand my moodiness, my sadness, my frustration and my sorrow. You would understand my need to be “DONE” raising children, without thinking I am a cold hearted woman. These 15+ years have been like 45 years raising typical kid.You would understand my need to be alone. The truth is, I am never alone because even when I manage to do something for me, I am only a text or phone call away and believe you me, I am his phone a friend and he uses that option many times a day.You would understand my selfishness, as the only way I have found to survive. You would understand the value I place in solitude, my home and inner peace. This is what keeps me from blowing my brains out or taking a hand full of pills.If you really knew me ...you would know that my inner struggle is created by the contrast of my life on the outside, versus how I feel inside. It is a minor miracle that I haven’t rolled over and played dead or given up and settled into a fetal position in the corner somewhere.Instead, I press on. I set goals. I work on MY dreams to keep myself from being devastated about his life. The fact that I haven’t stopped trying to live a consciously connected life is extraordinary. I am special. I know this.It is no small feat that against the carb and junk cravings he has, I still insist on feeding all of my children healthy, quality food. There are some days when the smack down I receive about food sends me to eat or drink away my own stress. I may give in at times, but I never GIVE UP. I hold to my stance 90% of the time. Yes, I give in. So what? That doesn’t make me hypocritical. It makes me human. The daily fight over food makes me crazy at best.If you really knew me ...you would understand how much energy it takes to be me on a daily basis. You would understand my need to “check out”. My heart is still here, my intentions are still pure, but I can only give what I can give. I can’t apologize to you or anyone else if how I give isn’t the way you want to receive. I love with all my heart, but sometimes I need to love from afar.If you really knew my life, you would see the extraordinary feat it is to remain positive and maintain inner Zen amidst the outer storm. Then and only then, would you understand why I control my world, my home, and my environment in order to achieve that.Then and only then would you truly get it.Kathleen is a married (22 years), mother of three handsome, amazingly unique young men with different abilities. They are ages, 13, 15, and a 20 year-old, who just moved out on his own. Her boys have an alphabet soup of diagnoses, one of them, with Aspergers. She is an inspiration to me and many of us in the 'Confessions' community.
Monday, September 30, 2013
Sunday, September 22, 2013
"We gon Party Like It's Yo Birthday"
I am either completely nuts or oblivious to how much craziness would go into having a house full of teenage boys on the spectrum. The answer must be I'm nutso because I had so much fun watching them have fun.
I grew up with a bunch of teenagers in my house and I was friends with mostly boys and a few girls. There were many occasions that there were at least 5 boys and 3 girls sitting around the living room in our small apartment. My mom would casually come into the room to say something smart to one of the guys..
"You have such a beautiful head of hair. Too bad I can see it underneath that baseball cap that you're wearing at my kitchen table."
Or when my friend Kevin would come by to pick me up for school every morning. She would say...
"I don't know why you bother dealing with Karen. She's always late!"
For a good while there I wondered if I would ever have a house full of teenagers for Red. There was a time when My Prayer for for him to have a least one friend, who would love and accept him for exactly who is is.
Blue on the other hand, has always been extremely social. He has never had trouble being friends with both kids on the spectrum, and NT's. Most of his close pals these days are on the spectrum. He met most of his friends through social skills groups at school, some in elementary, and a couple in middle school.
Red, had a group of NT's that he was friends with all throughout elementary school, through about the 4th or 5th grade, when the differences between them started to become very apparent. They all got the joke and he didn't. He started to slowly feel left out. He had to move schools a couple of times because of behaviors, and because our local school didn't have the appropriate supports for him. As a result, he had hit or miss connections with peers through most of middle school. He didn't really want to become friends with kids on the spectrum. He didn't want to be different. For a long time, he longed to be a part of the in-crowd -the popular kids. In fact, part of him still does. He spent a lot of time working against himself. The result being -very few friends.
At the age of 18, now a senior in high school, Red has a few really good friends. They get him, and he gets them. They have things in common, such as their Christian faith, and their love of music, and they are all on the spectrum.
He met, A -through a private Aspergers, social skills group. He's 20 years old now.
He met N -in high school. He is probably on the spectrum, but has a brain injury and some special quirks.
He met another friend A2 -out at the airport when they were both spotting airplanes, during his airplane fixation phase. A -is also a 17 year-old Aspie.
So for Red's birthday, we took one of his friends to his favorite eatery, for lunch. Blue attended as well. School actually let out early, for some reason. *insert sarcasm here. I'll thank President Obama for making Red's birthday an early release day.
This weekend, Red decided to have a movie night, here at the house so that he could include all of his good friends. Blue decided to tag-along on this party train and invited 3 of his good friends. Thank God ...only 5 boys showed up. So yeah...fun for me!
Hubby totally bailed on me. He can't stand a bunch of kids wandering around the house, making a bunch of noise. The boys come in, they don't always remember to speak and be gracious. Hello...they're on the spectrum. One boy, goes straight into the refrigerator and looks around, on his own. Another boy, goes in and out of the bathroom to check on the fans. He's fixated on the decibel level of the fans. One of the other boys, just likes to walk up and down the stairs, and kind of wander from room to room.
Guess what? I don't really care. They aren't hurting anything really. One of the wonderful things about being an autism parent, at least for me -is embracing difference. The more different my boys, friends are, the more I seem to love them all. It's an honor really, to host them in my home and spend time with them.
I put my nosey mother upstairs in my bedroom with a bottle of wine and closed the door. If she were within earshot of the activities, she would have had something to say about everything, and would be involved in every conversation. She did get the opportunity to tell N that it is inappropriate to go in our refrigerator looking around. Excuse me Mom. I know you live here but, no thanks! This is my house. They do have openings at the senior building down the street, if you want peace, quiet and sanity. We don't have any of that around here.
As the party begins, 3 of the boys are pacing up and down the street in front of the house. They see a cat and decide to go across the street to pay him a visit. They sit on the curb talking to each other and the cat for a while. In the meantime, I know they're starving, but I need their input before I order pizza.
Now deciding on pizza was really fun! Imagine 7 guys on the spectrum, trying to decide which place is o.k. to order pizza from. This one hates Pizza Hut. This one hates Papa Johns. These two hate little Caesars.
"The cheese from Dominoes is really gross!" says another one.
They finally decide on a local franchise called Marcos. Here in Texas a guy named Marco is probably Mexican. But apparently, he decided to open and Italian pizza place. Does that sound appealing to me? No. But it's not my party.
The next thing we have to do is decide all of the different kinds of pizza to order with all of our individual likes, and dislikes. Yeah...fun! That didn't take long at all.
Next on tap is the movie vote, which Blue totally wants to dominate. In fact, before the guests even arrive he has a meltdown because he doesn't want Star Wars in the list of choices. He wants Lord of the Rings, a very long, 3 hour movie. There is absolutely no way, all of these guys are going to stay seated all the way through a 3 hour movie in such close proximity to one another, with all of the talking through the movie, stemming, and outbursts.
By a democratic vote, they settle on Captain America. The vote is almost unanimous. Blue.is.not.happy!
"There is no way I'm going to sit through this entire movie that I do not want to watch! It sucks. No one ever wants to do what I want to do. Everyone thinks whatever I like sucks! I bet you no one except for me and J -even like the Beatles!"
J says, "Yeah. I know what you mean. Society sucks. They don't usually agree with me either, but we did vote and you invited me over here, so you just have to deal with it."
I thought I was going-to-die.
They start playing the movie as we wait for the pizza to arrive. Once it gets here, 20 minutes into the movie, they decide to pause the movie. They totally gorge themselves in pizza, fruit punch and lemonade. Best line during the meal...
"If I had known there wasn't going to be any soda. I would have brought some." No pretense here!'
After they eat, they attempt to settle back down and watch the movie. It wasn't happening. Everyone was loud, talking over one another. It was like watching an episode of The View, only with teenage boys on the spectrum.
Red turns the volume to the movie sky high so that everyone would shut up. That sends a couple of them out of the room. One specifically, comes upstairs and lays on the couch in our family room. The next thing I know, they are all upstairs and the movie is turned off.
We have a group in one room playing video games and chatting. Another group in another room with loud, heavy medal music, along with a live electric guitar and amplifier. Periodically, a couple of boys would come out to the family room to start wrestling, to pace the floor, to take silly pictures of themselves, or just have a quiet moment with their cell phones.
One of the boys, A -the 20 year-old, made his way from the couch in the family room, to the bed in Blue's room, to the bed in Red's room. He is the oldest, a college student, who had been up early that morning studying and then drove himself to the party. I was worried that he may not be able to wake himself up enough to drive home. There was no alcohol involved, of course. He did make it home safely.
Aspergers Dad finally showed up, just in time to take a couple of the boys home. He had been out at a sports bar watching the game, in order to escape the festivities. He worked so hard driving them around the corner!
So Dad got away with murder. At least I think so. The boys all had a great time. We even had one straggler who spent the night. Lights were out by midnight, so that they could go to church this morning -on their own. They made arrangements for Red's Pastor to pick them up.
Aspergers Mom? Yes. I had plenty of wine on tap to help keep my nerves under control. The vote is still out as to weather or not I need psychiatric evaluation.
I grew up with a bunch of teenagers in my house and I was friends with mostly boys and a few girls. There were many occasions that there were at least 5 boys and 3 girls sitting around the living room in our small apartment. My mom would casually come into the room to say something smart to one of the guys..
"You have such a beautiful head of hair. Too bad I can see it underneath that baseball cap that you're wearing at my kitchen table."
Or when my friend Kevin would come by to pick me up for school every morning. She would say...
"I don't know why you bother dealing with Karen. She's always late!"
For a good while there I wondered if I would ever have a house full of teenagers for Red. There was a time when My Prayer for for him to have a least one friend, who would love and accept him for exactly who is is.
Blue on the other hand, has always been extremely social. He has never had trouble being friends with both kids on the spectrum, and NT's. Most of his close pals these days are on the spectrum. He met most of his friends through social skills groups at school, some in elementary, and a couple in middle school.
Red, had a group of NT's that he was friends with all throughout elementary school, through about the 4th or 5th grade, when the differences between them started to become very apparent. They all got the joke and he didn't. He started to slowly feel left out. He had to move schools a couple of times because of behaviors, and because our local school didn't have the appropriate supports for him. As a result, he had hit or miss connections with peers through most of middle school. He didn't really want to become friends with kids on the spectrum. He didn't want to be different. For a long time, he longed to be a part of the in-crowd -the popular kids. In fact, part of him still does. He spent a lot of time working against himself. The result being -very few friends.
At the age of 18, now a senior in high school, Red has a few really good friends. They get him, and he gets them. They have things in common, such as their Christian faith, and their love of music, and they are all on the spectrum.
He met, A -through a private Aspergers, social skills group. He's 20 years old now.
He met N -in high school. He is probably on the spectrum, but has a brain injury and some special quirks.
He met another friend A2 -out at the airport when they were both spotting airplanes, during his airplane fixation phase. A -is also a 17 year-old Aspie.
So for Red's birthday, we took one of his friends to his favorite eatery, for lunch. Blue attended as well. School actually let out early, for some reason. *insert sarcasm here. I'll thank President Obama for making Red's birthday an early release day.
This weekend, Red decided to have a movie night, here at the house so that he could include all of his good friends. Blue decided to tag-along on this party train and invited 3 of his good friends. Thank God ...only 5 boys showed up. So yeah...fun for me!
Hubby totally bailed on me. He can't stand a bunch of kids wandering around the house, making a bunch of noise. The boys come in, they don't always remember to speak and be gracious. Hello...they're on the spectrum. One boy, goes straight into the refrigerator and looks around, on his own. Another boy, goes in and out of the bathroom to check on the fans. He's fixated on the decibel level of the fans. One of the other boys, just likes to walk up and down the stairs, and kind of wander from room to room.
Guess what? I don't really care. They aren't hurting anything really. One of the wonderful things about being an autism parent, at least for me -is embracing difference. The more different my boys, friends are, the more I seem to love them all. It's an honor really, to host them in my home and spend time with them.
I put my nosey mother upstairs in my bedroom with a bottle of wine and closed the door. If she were within earshot of the activities, she would have had something to say about everything, and would be involved in every conversation. She did get the opportunity to tell N that it is inappropriate to go in our refrigerator looking around. Excuse me Mom. I know you live here but, no thanks! This is my house. They do have openings at the senior building down the street, if you want peace, quiet and sanity. We don't have any of that around here.
As the party begins, 3 of the boys are pacing up and down the street in front of the house. They see a cat and decide to go across the street to pay him a visit. They sit on the curb talking to each other and the cat for a while. In the meantime, I know they're starving, but I need their input before I order pizza.
Now deciding on pizza was really fun! Imagine 7 guys on the spectrum, trying to decide which place is o.k. to order pizza from. This one hates Pizza Hut. This one hates Papa Johns. These two hate little Caesars.
"The cheese from Dominoes is really gross!" says another one.
They finally decide on a local franchise called Marcos. Here in Texas a guy named Marco is probably Mexican. But apparently, he decided to open and Italian pizza place. Does that sound appealing to me? No. But it's not my party.
The next thing we have to do is decide all of the different kinds of pizza to order with all of our individual likes, and dislikes. Yeah...fun! That didn't take long at all.
Next on tap is the movie vote, which Blue totally wants to dominate. In fact, before the guests even arrive he has a meltdown because he doesn't want Star Wars in the list of choices. He wants Lord of the Rings, a very long, 3 hour movie. There is absolutely no way, all of these guys are going to stay seated all the way through a 3 hour movie in such close proximity to one another, with all of the talking through the movie, stemming, and outbursts.
By a democratic vote, they settle on Captain America. The vote is almost unanimous. Blue.is.not.happy!
"There is no way I'm going to sit through this entire movie that I do not want to watch! It sucks. No one ever wants to do what I want to do. Everyone thinks whatever I like sucks! I bet you no one except for me and J -even like the Beatles!"
J says, "Yeah. I know what you mean. Society sucks. They don't usually agree with me either, but we did vote and you invited me over here, so you just have to deal with it."
I thought I was going-to-die.
They start playing the movie as we wait for the pizza to arrive. Once it gets here, 20 minutes into the movie, they decide to pause the movie. They totally gorge themselves in pizza, fruit punch and lemonade. Best line during the meal...
"If I had known there wasn't going to be any soda. I would have brought some." No pretense here!'
After they eat, they attempt to settle back down and watch the movie. It wasn't happening. Everyone was loud, talking over one another. It was like watching an episode of The View, only with teenage boys on the spectrum.
Red turns the volume to the movie sky high so that everyone would shut up. That sends a couple of them out of the room. One specifically, comes upstairs and lays on the couch in our family room. The next thing I know, they are all upstairs and the movie is turned off.
We have a group in one room playing video games and chatting. Another group in another room with loud, heavy medal music, along with a live electric guitar and amplifier. Periodically, a couple of boys would come out to the family room to start wrestling, to pace the floor, to take silly pictures of themselves, or just have a quiet moment with their cell phones.
One of the boys, A -the 20 year-old, made his way from the couch in the family room, to the bed in Blue's room, to the bed in Red's room. He is the oldest, a college student, who had been up early that morning studying and then drove himself to the party. I was worried that he may not be able to wake himself up enough to drive home. There was no alcohol involved, of course. He did make it home safely.
Aspergers Dad finally showed up, just in time to take a couple of the boys home. He had been out at a sports bar watching the game, in order to escape the festivities. He worked so hard driving them around the corner!
So Dad got away with murder. At least I think so. The boys all had a great time. We even had one straggler who spent the night. Lights were out by midnight, so that they could go to church this morning -on their own. They made arrangements for Red's Pastor to pick them up.
Aspergers Mom? Yes. I had plenty of wine on tap to help keep my nerves under control. The vote is still out as to weather or not I need psychiatric evaluation.
Wednesday, September 18, 2013
18 plus
Today my first born son hit's adulthood! Today he is 18 years old and though he celebrates, he is also afraid of the phase of life he is entering into. Most people who have Aspergers do not like change and the changes that he is facing are major! He's afraid of all of the responsibility that comes along with adulthood. Everyday he frets over one thing or another. Of course, he lovingly shares all of those fears and feelings with me -over and over and over again, every.single.day!
Ordinary people celebrate 18 with much ado. Finally, you reach the age where you don't absolutely have to listen to your parents anymore. You can start making some decisions for yourself. You can go away to college -move out, drive, vote, join the military! In some parts of the world you can drink...legally. In other parts of the world you can drink illegally.
He wants to develop his video business. He wants to get a job. He wants to further is education. He wants to drive. He wants to get a car. But dear sweet Jesus -that's a lot of work...a lot of crap to figure out. The one thing he absolutely does not want to do -is move out!
Well -why should he want to move out and lose all the comforts of someone else paying for everything? Why not stay at home so that if and when, he makes money...he can keep it all and spend it only on the things that he wants? Why not let childhood with the benefit of parents paying for your lifestyle, last a little longer? Who wants all of that responsibility? Who wants all of that change? No thanks. I appreciate the offer of freedom and all, but I'll take the cushy route. Thank you very much!
Only, he doesn't really want to listen to his parents anymore. He wants to make his own rules and he would like for all of us to follow them. Unfortunately -that's not how the world works. Not my world anyway.
Even with all of his fears, things that he still needs to learn, and maturing that he has yet to do, there is much to celebrate today. The boy has come a long way. He still has much to conquer. However, he has grown up and matured beyond the point of recognition in some aspects. He is well on his way.
18 Plus things to celebrate about Red today!
PLUS +
This past weekend he booked his first official job as a Video Production contractor for a non-profit organization where he was paid professionally! Filled out his first W-9 and all! This was a gala benefit where he made lots of connections and contacts for future business.
Although he really does have a long way to go and all of the change and responsibility is a really scary thing. I believe he will rise to the occasion. He will slowly take on life and meet it's challenges.
Best of all with hope and prayer...he will eventually MOVE OUT OF MY HOUSE!
Ordinary people celebrate 18 with much ado. Finally, you reach the age where you don't absolutely have to listen to your parents anymore. You can start making some decisions for yourself. You can go away to college -move out, drive, vote, join the military! In some parts of the world you can drink...legally. In other parts of the world you can drink illegally.
He wants to develop his video business. He wants to get a job. He wants to further is education. He wants to drive. He wants to get a car. But dear sweet Jesus -that's a lot of work...a lot of crap to figure out. The one thing he absolutely does not want to do -is move out!
Well -why should he want to move out and lose all the comforts of someone else paying for everything? Why not stay at home so that if and when, he makes money...he can keep it all and spend it only on the things that he wants? Why not let childhood with the benefit of parents paying for your lifestyle, last a little longer? Who wants all of that responsibility? Who wants all of that change? No thanks. I appreciate the offer of freedom and all, but I'll take the cushy route. Thank you very much!
Only, he doesn't really want to listen to his parents anymore. He wants to make his own rules and he would like for all of us to follow them. Unfortunately -that's not how the world works. Not my world anyway.
Even with all of his fears, things that he still needs to learn, and maturing that he has yet to do, there is much to celebrate today. The boy has come a long way. He still has much to conquer. However, he has grown up and matured beyond the point of recognition in some aspects. He is well on his way.
18 Plus things to celebrate about Red today!
- He can articulate his feelings and process them extremely well -when he is lucid and not deep into perseveration on a negative topic.
- He plans his social and church activities without assistance and even arranges for transportation *Unfortunately ...I am still one of his major transportation resources.
- He gets up for school and church on his own -the majority of the time.
- He takes his medication without reminder 70% of the time.
- He fills his medication into the weekly distribution boxes and has even called in refills.
- He takes care of his hygiene without reminders. He has always been a snazzy, neat dresser.
- He does a number of household chores with great attention to detail. He can clean a bathroom better than any maid service!
- He does his own laundry in a timely fashion without reminder.
- He has no love for school, but he completes his work with some assistance, in a small special education setting.
- His school attendance is excellent.
- He helps other's with more severe disabilities in the school setting. The kids love him! He makes wonderful connections with these students. He is very compassionate with them. This is probably the thing that makes me the most proud.
- He cooks basic meals for himself and does some grocery shopping.
- He has developed some lasting friendships with appropriate peers and gets together with them regularly.
- He sets his own calendar of appointments and meetings and sends out reminders to all parties involved. *Yeah -he even reminds me ...the forgetful one
- He seeks out available resources for help, such as his Pastor, his Video Tech mentor, extended family members and even a local policemen, who will actually come out to our house, just to chat with him.
- He is scheduled to complete all of his high-school credits by January, 2014. He will continue in the 18 plus program through the school district at the very least, until the end of the school year when he will walk across the stage with his peers.
- He has developed his own web site for his video production business and made his own business cards.
- Up until recently, he has done productions for school, friends, family, churches and non-profit organizations, all with self-taught skills and no formal training.
This past weekend he booked his first official job as a Video Production contractor for a non-profit organization where he was paid professionally! Filled out his first W-9 and all! This was a gala benefit where he made lots of connections and contacts for future business.
Although he really does have a long way to go and all of the change and responsibility is a really scary thing. I believe he will rise to the occasion. He will slowly take on life and meet it's challenges.
Best of all with hope and prayer...he will eventually MOVE OUT OF MY HOUSE!
Friday, September 13, 2013
Aspergers & Physical Education -Guest Post by Christopher Owens
The following is an essay written by a 14 year-old boy with Aspergers for his Physical Education teacher. He is spot on, honest, and dead serious. He can not see why we all think he is being so hilarious, when all he is doing is telling the truth and the whole truth, so help me God.
I am publishing it here because I believe this is the way many of our young men with Aspergers feel about physical education and exercise. I have heard some of the same words from my son Blue. This young man does an excellent job of educating us all.
Thank you Christopher for allowing me to share it!
Christopher Owens
Physical Education
9 September 2013
Weight Training Portfolio Essay
This is my essay for the weight training portfolio assignment. In this essay I will discuss my physical condition, future fitness goals, and sports and exercises that I enjoy participating in.
By the end of this essay, you should know all of the information regarding my physical condition and goals.
First, my physical condition. As it stands, I cannot run half a mile without getting extremely fatigued. This tells you that my physical condition is poor, at best. At worst, you could say that I am so physically unfit, that a walrus would beat me in a race. In fact, the only location with any real muscle mass on me is my legs, as my arms have little to no muscle mass. I do however, manage to maintain a slim figure. This is surprising, considering that I do little to no physical activity, and have less than healthy eating habits. It is currently believed that my slim figure is due to an incredibly high metabolism. This metabolism also contributes to the fact that I am quite limber, and am capable of extraordinary feats of flexibility. So far my metabolism has shown no signs of slowing down, and I am particularly happy about this.
Moving on, I will now discuss my fitness goals. Long story short, I have none. I don't plan on needing any muscles in my job in the future, and quite frankly, I like it that way. I personally don't really see the need for muscles and such, and can't think of a single instance in my adult life in which I will require them. This doesn't mean that there are no instances in which I will need them, simply that I can't think of one of such instances. Maybe if I have a really fat baby, and it's my turn to push the stroller, but somehow I don't think that will happen. If you think I need fitness goals, well that's your opinion. I however, see no need for them.
Finally, we come to sports and exercises that I enjoy. Quite frankly, there aren't any intense exercises that I enjoy. We have an indoor trapeze at my house, which I enjoy. I also enjoy simply sitting and bouncing on an exercise ball. Swimming and the trampoline in my backyard are the last activities that I enjoy, but both are recreational only. When on the trampoline I take breaks quite often, and I don't swim laps or anything like that. Personally I find it quite pathetic that I can't swim in place for ten minutes without getting tired, but I suppose there's nothing to be done for it. I think that this is quite a solid lineup of activities that I enjoy to do, but I agree that it could be better.
This concludes my essay, and I hope that you have learned about my health and exercise habits by now. To recap, we have learned that I am flexible, and enjoy a wonderful metabolism. We have learned that I have no fitness goals, and have no desire to create any. Finally, we have learned of the exercises and activities that I enjoy to do. If you have no idea what I am talking about, due to reading this backwards or Alzheimer, I suggest that you either read in the correct way, or seek medical attention, depending on which one it is. Now if you can excuse me, I have a calender of fake exercises to construct.
I am publishing it here because I believe this is the way many of our young men with Aspergers feel about physical education and exercise. I have heard some of the same words from my son Blue. This young man does an excellent job of educating us all.
Thank you Christopher for allowing me to share it!
Christopher Owens
Physical Education
9 September 2013
Weight Training Portfolio Essay
This is my essay for the weight training portfolio assignment. In this essay I will discuss my physical condition, future fitness goals, and sports and exercises that I enjoy participating in.
By the end of this essay, you should know all of the information regarding my physical condition and goals.
First, my physical condition. As it stands, I cannot run half a mile without getting extremely fatigued. This tells you that my physical condition is poor, at best. At worst, you could say that I am so physically unfit, that a walrus would beat me in a race. In fact, the only location with any real muscle mass on me is my legs, as my arms have little to no muscle mass. I do however, manage to maintain a slim figure. This is surprising, considering that I do little to no physical activity, and have less than healthy eating habits. It is currently believed that my slim figure is due to an incredibly high metabolism. This metabolism also contributes to the fact that I am quite limber, and am capable of extraordinary feats of flexibility. So far my metabolism has shown no signs of slowing down, and I am particularly happy about this.
Moving on, I will now discuss my fitness goals. Long story short, I have none. I don't plan on needing any muscles in my job in the future, and quite frankly, I like it that way. I personally don't really see the need for muscles and such, and can't think of a single instance in my adult life in which I will require them. This doesn't mean that there are no instances in which I will need them, simply that I can't think of one of such instances. Maybe if I have a really fat baby, and it's my turn to push the stroller, but somehow I don't think that will happen. If you think I need fitness goals, well that's your opinion. I however, see no need for them.
Finally, we come to sports and exercises that I enjoy. Quite frankly, there aren't any intense exercises that I enjoy. We have an indoor trapeze at my house, which I enjoy. I also enjoy simply sitting and bouncing on an exercise ball. Swimming and the trampoline in my backyard are the last activities that I enjoy, but both are recreational only. When on the trampoline I take breaks quite often, and I don't swim laps or anything like that. Personally I find it quite pathetic that I can't swim in place for ten minutes without getting tired, but I suppose there's nothing to be done for it. I think that this is quite a solid lineup of activities that I enjoy to do, but I agree that it could be better.
This concludes my essay, and I hope that you have learned about my health and exercise habits by now. To recap, we have learned that I am flexible, and enjoy a wonderful metabolism. We have learned that I have no fitness goals, and have no desire to create any. Finally, we have learned of the exercises and activities that I enjoy to do. If you have no idea what I am talking about, due to reading this backwards or Alzheimer, I suggest that you either read in the correct way, or seek medical attention, depending on which one it is. Now if you can excuse me, I have a calender of fake exercises to construct.
If you know a Physical Education teacher or coach ...please share this with post with them!
~Karen
Monday, September 9, 2013
The End of The Rainbow -Guest Post by Sue Smelser Nash
My son has marched to the beat of his own drum since birth! There goes the immunization theory for Aspergers. He was treated for ADHD from 1st grade until 4th grade at which time I just didn't feel like Ritalin was answering any of our problems. He was diagnosed rather quickly with Aspergers at an appointment with child development specialists at age 9. He fits the mold of Apergers rather well, except for the fact that he has no problem making eye contact and loves to socialize. He just doesn't do it appropriately at times!
We grew up with many of the issues that I read about you all having every day. I think that is why this page, fb/Confessions Of An Aspergers Mom is so helpful. It just confirms that we are not alone in what we are going through with our kids.
I don't mean to scare any of you with pubescent kids, but the teenage years were HELL! From 13 to about 15 years old I really would just like to rip from my memory! Rants and rages nightly for 1-2 hours, just like a colicky baby, only he was almost 6 foot tall and weighed 200 pounds. Luckily, it was only verbal rages and we never had to deal with him physically hurting anyone. I must admit there were a few nights during that time that I contemplated sleeping with my door locked, just because the situation was so volatile. We got through it with the help of an amazing psychologist. We went through several before found one that actually had a clue!
Abilify is our miracle pill. Though it did not completely stop all of the issues he did become much more bearable! My son is very intelligent - scored at college master's level on vocabulary, plays some instruments by ear, has a beautiful singing voice, a memory like an elephant.... but does math at about 1st grade level, writes like a 2nd grader, has the hygienic level of about a 12 year old boy, and has the judgment level of about an 8 year old. Sigh...
He graduated high school and went to a career training center about 2 hours from home for a year where he was supposed to learn a trade so that he could become employable instead he learned to smoke, curse, and sell his plasma! He did complete the program and I would be lying if I didn't tell you that it was during the first month he was out of the house that I realized how much stress he had me under! Many of you will go through the same thing! He moved back into our home and we figured out pretty quickly that he would not be able to get a job much less hold one down and he entered a sheltered workshop program.
We finally got him approved for SSI which alleviated many concerns about affordable healthcare and medications (Abilify costs over $400 if not covered by insurance!). It also opened many doors for him such as group homes, etc. He has always wanted to live independently and we have encouraged that because we know that we won't live forever and he will need someone to help him the rest of his life (with money, meds, decisions). Though his younger brother has always said he will help him when we are gone it just wasn't enough security for me! So, group home lists are long and you can have to wait for years! We put him on all of them and even agreed as a family that if there was an opening within 2 hours of home it would be doable. Then I gave it go God to handle.
About 18 months after going on the waiting list, we got a call out of the blue from a private home just 25 minutes from our home. They had an opening. We toured it. He loved it! They have a day program that he works at and earns a paycheck! He moved there the next week. We pick him up to come home about every other weekend and visit him by phone daily. He could not be in a better place. These people just fabulous are are truly of a higher calling! He has supervision but yet has freedom. He has security and I have peace of mind that he is cared for and always will be.
Don't get me wrong, we still have issues! Currently, we are working on the "tales" that he contrives. Such as, he has told everyone in the day program that I am opening an Italian restaurant, that his brother has a baby, etc! He can tell them with such detail that if you don't know us or haven't talked to us in a while, you will believe them! It is something we will work through.
I am just so thankful for the text that I received from one of his caregivers that said that my son is so helpful around the group home and helps with other residents and that they love talking to him and that this story telling is just something they can work on as a goal! That did this Momma's heart good!
I hope our story will encourage some of you that may be having a bad day. Know that there sometimes is a pot of gold at the end of the rainbow!
Editorial Note:
I met Sue online through her brother-in-law Dr. William Nash, who was our family doctor before he retired. He now writes a blog, Organic Green Doctor.com. I have come to love Dr. Nash, his wife Jo Ann, Sue and much of their family. I love Sue as a resource because her son is just a little older than Red. Their diagnoses stories are very similar.
Since our boys are older, we didn't have all of the benefit of some of early intervention, therapies that many of you may have. My son was born in 1999 and 3 years later, when he saw his first neurologist, Aspergers wasn't even on the radar. Even without some of those interventions, as you can see there is hope that our kids will live independently from us one day.
I just hope mine is sooner than later!
~Karen
p.s. Please join us on Facebook Confessions of an Aspergers Mom It's a wonderful place to find support. I update it daily with the crazy happenings in our house. We laugh away the tears over there.
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