Yesterday was a stressful afternoon. I've been seeing a Psychologist with Jared since he was in kindergarten. When Jared entered kindergarten, his teacher felt that Jared had a neurological disorder because he had a hard time paying attention. After months of testing with the school, it was discovered that Jared did have an attention disorder and he was on the Autistic spectrum. I wasn't really sure what that meant because Jared seemed to be a normal boy. He didn't display any of the autistic tendencies that I was familiar with. He seemed to be affectionate and he was pointing by the age of 1,etc. so Autism didn't make sense to me. I had a lot to learn.
I started seeing our child Psychologist about 2 years ago. Through his analysis, Jared has been diagnosed with Aspergers and ADHD. He is on Ritalin for his ADHD. I was on my way to pick Jared up yesterday when I got a call on my cell phone. It was the camp director of the day camp Jared attends. The director was explaining that Jared had bitten someone. Apparently, Jared had a ball that a boy was trying to take away from Jared and Jared didn't want to give it up. One thing led to another and Jared ended biting the boy and when the boy tried to pull his hand away, Jared wouldn't let go and left marks in the boys hand.
Jared is not a malicious boy and to me (not to condone his behavior) this seemed like Jared was extremely frustrated. I know that neurotypcial kids tease him because his behaviors are different. Kids on the spectrum are in fact bullied, and there are problems with bullying at the camp because there was a notice in the flier that bullying would not be tolerated.
When I got to the camp, Jared was sitting in the office on a chair, and when I asked him what had happened, he did admit to biting the boy and I explained that it is unacceptable behavior to bite someone, and as the director and I were talking with him, tears welled up in his eyes and he said, "Nobody likes me. They tease me and don't include me. They tell me I'm gay." The counselors response to this was, "Jared, now you know that isn't true. People do like you. They just get frustrated when you stand too close to them and when you put your hands on them. They push you away because you stand too close." I then explained to the counselor, this is a prime example of the social disorder. Neurotypical children learn through social interaction that standing too close to someone is invading that persons personal space and people on the autistic spectrum have a deficiency that doesn't allow them to learn on their own about personal space. I told the counselor that we were on our way to see his Psychologist and this incident would be a main topic of discussion. I was annoyed by the fact that when Jared was trying to explain how he felt, it was discounted by the counselor. Instead of trying to understand Jared and trying to figure out who is calling him gay, the counselor chose to tell Jared that the way he felt simply wasn't true. I believe that Jared is teased at the camp and his frustration level was high yesterday and he succumbed to the frustration and bit one of his tormentors.
After our psychologist talked with Jared (alone) about the incident, the psychologist told me a story that Jared had told him about. There was a day when a group of kids that Jared was sitting with at lunch tricked him. Jared is terrified of bees and according to Jared, these kids had a half eaten sandwich and let it sit out until bees were attracted to it and then tricked Jared into going near the sandwich so that the bees would follow him. I believe these kids learned that Jared is afraid of bees and thought it was entertaining for them to watch Jared being tormented by the bees, and then you wonder why he defends himself albeit not the best choice but given the fact that he is 8 and emotionally immature, his choice made sense to him. We have a lot of work ahead of us.
I get really frustrated in trying to explain Aspergers to people because they just want to boil Jared's behavior to defiant behavior instead of what it truly is. Jared has a learning disability when it comes to social rules. I'm afraid that this "bad behavior" might end up being a self fulfilling prophecy for Jared. I'm afraid in his mind he is going to say, "What is the use? I'm trying my hardest to be good and fit in and have friends and when people hurt me, it's discounted and alls anyone sees from me is bad behavior, so I should just be bad."
Jared and I have had the conversation of why biting is a bad choice, but I also understand that life in the Neurotypical world is frustrating for an Aspergian just as it is frustrating for me to try and educate Neurotypicals about Autistic behavior. Neurotypicals just don't want to hear it!! I feel like a salmon trying to swim upstream against the tide.
Tuesday, August 25, 2009
Sunday, August 23, 2009
Understanding Autism more through Aspergers
As I understand it, Aspergerians are the same as Autistics with one significant difference in that Aspergians have better language skills. I was watching a story on Dateline or 20/20 (I can't remember which) about an Autistic twin. Her name is Carly. She has autism yet her twin does not. I found that to be interesting considering we feel there is a genetic side to autism. It left me wondering how one twin could have autism and the other did not. I speculate that it has something to do with they way testosterone and estrogen affected or did not affect each fetus.
Carly developed next to her twin and through her development her parents noticed that she was not meeting milestones as her twin was. They consulted many physicians and had done many tests with the result leading to autism. Carly grew progressively worse and all of the friends and relatives wondered why her parents did not institutionalize her. They simply couldn't. Carly was their child for better or for worse. They accepted her warts and all. It brought tears to my eyes. I understood how they couldn't give her up.
They spent thousands of dollars on therapies for Carly and when she turned 13 (I think) she was introduced to a computer and she typed the words "HELP HURT". She was trying to reach out. When her parents finally understood that she did have language through a computer, they required her to type all of her wants and needs and now she communicates beautifully and effectively through her computer.
She has written that she does have feelings, and her body does not work they way she wants it to and she has no control over her body and that is frustrating for her. She longs to be like other children. She wants friends. She wants a life.
I couldn't help but think of Helen Keller. A girl who became ill as an infant and was left being mute, deaf and blind, and because her parents wouldn't give up on her, she went on to become college educated and a pillar of our society and has taught us so much.
I think learning more about Aspergers is going to revolutionize the way we understand autism. I can remember as a kid everyone saying tha autistic people don't have feelings for people just things, but the more I talk with and watch my Aspergian son develop, I know that simply isn't true. If anything Aspergians are overwhelmingly sensitive and caring. Carly demonstrates that as well.
I can remember when my son (before I knew that he had Aspergers and when my sister in law thought he was autistic- he was about 3 or 4 at the time) saw me crying on the couch and he came up to me and said, "Mommy why are you sad." When he said that I thought, "There it is. He is not autistic because if he were he would not recognize emotion." That simply is false. My Aspergian is overflowing with emotion but his body and nervous system is overwhelmed by external stimuli and he tries to compensate for it through being loud and screaming which other people view as bad behavior.
I think as society gets more technologically advanced, neurotypicals are becoming less caring for people and Aspergians and Autistic people can see how superficial society is. I think Aspergians and Autistic people have a deeper spirit and are closer to God. I think we have a lot to learn from this class of society in how to treat others and live the golden rule: "Treat others as you would want to be treated." I think people on the spectrum are treated unfairly by society. I wish more people were like Aspergians. I think people would be happier and society would be richer. I've lost patience with Neurotypicals!!
Carly developed next to her twin and through her development her parents noticed that she was not meeting milestones as her twin was. They consulted many physicians and had done many tests with the result leading to autism. Carly grew progressively worse and all of the friends and relatives wondered why her parents did not institutionalize her. They simply couldn't. Carly was their child for better or for worse. They accepted her warts and all. It brought tears to my eyes. I understood how they couldn't give her up.
They spent thousands of dollars on therapies for Carly and when she turned 13 (I think) she was introduced to a computer and she typed the words "HELP HURT". She was trying to reach out. When her parents finally understood that she did have language through a computer, they required her to type all of her wants and needs and now she communicates beautifully and effectively through her computer.
She has written that she does have feelings, and her body does not work they way she wants it to and she has no control over her body and that is frustrating for her. She longs to be like other children. She wants friends. She wants a life.
I couldn't help but think of Helen Keller. A girl who became ill as an infant and was left being mute, deaf and blind, and because her parents wouldn't give up on her, she went on to become college educated and a pillar of our society and has taught us so much.
I think learning more about Aspergers is going to revolutionize the way we understand autism. I can remember as a kid everyone saying tha autistic people don't have feelings for people just things, but the more I talk with and watch my Aspergian son develop, I know that simply isn't true. If anything Aspergians are overwhelmingly sensitive and caring. Carly demonstrates that as well.
I can remember when my son (before I knew that he had Aspergers and when my sister in law thought he was autistic- he was about 3 or 4 at the time) saw me crying on the couch and he came up to me and said, "Mommy why are you sad." When he said that I thought, "There it is. He is not autistic because if he were he would not recognize emotion." That simply is false. My Aspergian is overflowing with emotion but his body and nervous system is overwhelmed by external stimuli and he tries to compensate for it through being loud and screaming which other people view as bad behavior.
I think as society gets more technologically advanced, neurotypicals are becoming less caring for people and Aspergians and Autistic people can see how superficial society is. I think Aspergians and Autistic people have a deeper spirit and are closer to God. I think we have a lot to learn from this class of society in how to treat others and live the golden rule: "Treat others as you would want to be treated." I think people on the spectrum are treated unfairly by society. I wish more people were like Aspergians. I think people would be happier and society would be richer. I've lost patience with Neurotypicals!!
Monday, August 17, 2009
The Great Negotiator
One thing I have noticed is that Aspergians are great negotiators. I think one of the challenging things in raising an Aspergian is that they think out of the box and have an advanced thought process for their age. Some of the things that they come up with I would have never thought of doing at their ages.
I noticed that Jared was a good negotiator when he was about 3 or 4 and he negotiated cookies. When Jared wanted a cookie and he was probably certain that I would say no if he asked for one he simply would go and get a cookie (or whatever it was that he wanted) and bring it in to me and say, "Mommy, I brought you a cookie." When I took his offering and had it mostly consumed he would then say, "Oh and this one is for me." How could I say no at that point? He had my hand in the cookie jar.
While we were at the fair over the weekend, he negotiated a chocolate chip cookie and a piece of someones fried dough while we were sitting at a picnic table. The chocolate chip cookie took place at the NY State Troopers. One of the Troopers was hiding behind a display having a taste of his sweet treat when Jared looked around the display and said, "Mmmmmm cookies!" The other Troopers who were manning the display with him all laughed and said, "Wow them are some powerful glasses." The Trooper who was eating the cookie then asked me if Jared could have one which of course I said Yes. The other Troopers were trying to figure out how it was that Jared spotted the cookies and all got a chuckle out of it.
The sour dough occurred later in the night while I was eating my sweet potato fries at a picnic table and a woman and her daughter were sitting across from us eating their fried dough when Jared said, "Mmmm that smells good. Where did you get it." The mother then pointed to the stand that she bought it from as Jared said, "That looks really good." and to my astonishment the woman offered Jared some of her fried dough.
I think one advantage of the social difference of Aspergers is that Aspergians are great negotiators. Sometimes as a parent it is frustrating because, at least from my experience, Aspergians think out of the box which is a different perspective from which a Neurotypical thinks, and as a parent you don't expect it. It is a trait that I will work on nuturing with Jared. It definitely keeps us on our toes.
I noticed that Jared was a good negotiator when he was about 3 or 4 and he negotiated cookies. When Jared wanted a cookie and he was probably certain that I would say no if he asked for one he simply would go and get a cookie (or whatever it was that he wanted) and bring it in to me and say, "Mommy, I brought you a cookie." When I took his offering and had it mostly consumed he would then say, "Oh and this one is for me." How could I say no at that point? He had my hand in the cookie jar.
While we were at the fair over the weekend, he negotiated a chocolate chip cookie and a piece of someones fried dough while we were sitting at a picnic table. The chocolate chip cookie took place at the NY State Troopers. One of the Troopers was hiding behind a display having a taste of his sweet treat when Jared looked around the display and said, "Mmmmmm cookies!" The other Troopers who were manning the display with him all laughed and said, "Wow them are some powerful glasses." The Trooper who was eating the cookie then asked me if Jared could have one which of course I said Yes. The other Troopers were trying to figure out how it was that Jared spotted the cookies and all got a chuckle out of it.
The sour dough occurred later in the night while I was eating my sweet potato fries at a picnic table and a woman and her daughter were sitting across from us eating their fried dough when Jared said, "Mmmm that smells good. Where did you get it." The mother then pointed to the stand that she bought it from as Jared said, "That looks really good." and to my astonishment the woman offered Jared some of her fried dough.
I think one advantage of the social difference of Aspergers is that Aspergians are great negotiators. Sometimes as a parent it is frustrating because, at least from my experience, Aspergians think out of the box which is a different perspective from which a Neurotypical thinks, and as a parent you don't expect it. It is a trait that I will work on nuturing with Jared. It definitely keeps us on our toes.
Timers are a Mom's Best Friend
Well, we ventured off to the Erie County Fair again yesterday with my parents. We arrived at about 2:00 pm. The first stop, of course, was the playground and instead of telling Jared that I didn't want him and Nathan to go on the playground because I knew a battle would probably ensue and then I'd spend about a half hour dragging the boys off the playground and getting into a sour mood, I decided to give Jared 5 minutes to play on the playground. I showed him the time on my cell phone that read 2:36 pm and told him that when my cell phone read 2:41 pm we would be moving onto something else with Grandma and Grandpa, and it was a success. At 2:41 pm, I told the boys it was 2:41 and we were done with the playground and Jared came right off (with Nathan) of the jungle gym and transitioned to the next thing with ease.
Sometimes it's hard for me to remember about the timer. I use it with his homework when he doesn't want to do it and it is a success with that as well. I set it for an hour and tell him he needs to work on his homework and when it goes off if he has homework left undone, then he immediately goes to bed. If it is finished he can wrap up the night with his favorite cartoon.
One of the more difficult things for Jared to do is transitioning and timers are a great tool!
Sometimes it's hard for me to remember about the timer. I use it with his homework when he doesn't want to do it and it is a success with that as well. I set it for an hour and tell him he needs to work on his homework and when it goes off if he has homework left undone, then he immediately goes to bed. If it is finished he can wrap up the night with his favorite cartoon.
One of the more difficult things for Jared to do is transitioning and timers are a great tool!
Saturday, August 15, 2009
Can't People Just Leave Medical Advice to the Professionals?
Yesterday my husband and I decided to take the boys to the Erie County Fair last night. It's one of the larger county fairs and it is a lot of fun for the kids. Jared always starts out saying that he doesn't want to leave the house and he doesn't want to go which is usual whenever we leave the house, but he always has fun when he gets there. Our first stop was the playground, and you just gotta love the advice people try and give you.
To give you the history, Jared is on Ritalin for his ADHD. I really had trouble putting him on drugs for a diagnosis of ADHD but at the time he was coming home from kindergarten saying he wanted to kill himself and he hated school and he was stupid. At first, I thought he was just using the phrase loosely and didn't know what he was really saying but he went through this every single night after school and he was getting bad reports as far as his behavior. After going through the month of December with my kindergartner saying he wanted to kill himself and pouring ketchup into bowls and pretending it was blood, I decided to give the teacher a call to express my concerns. Her thought was that Jared might have a chemical imbalance because he had a hard time focusing.
I always feared that Jared might be labeled with ADHD because he was extremely hard to manage as a toddler. He was always getting into things such that he was not allowed to enter my small kitchen because he would empty every single cupboard that he could reach onto the floor. I always suspected that teachers would think he was ADHD.
So, after I spoke with the teacher and a lot of testing and consultations with the school social worker, I felt it in my best interest to get a second opinion from an outside psychologist and months later and testing later, ADHD was confirmed and the only course of treatment from my psychologist was to put Jared on Ritalin which really terrified me. I had so many questions...what would the drug do to his body over the long haul? What if I decided to not put him on Ritalin? Would Jared come home every day wanting to kill himself if I didn't use Ritalin? How many years would he have to be on it? Can you just come off of it? Do you have to be weaned? So many questions. It was a very trying time, but my ultimate decision was to try it because Jared's mental health couldn't get any worse. I had to do something that would help him enjoy life and enjoy school.
I decided to put him on it and give it 2 months. If I didn't see an improvement, I would take him off. Well, we saw an improvement the first day! He was more focused in school, he was happier and he noticed a difference in himself. He had more self confidence and he tried harder in school. On Ritalin he was a success. Today the teachers refer to Jared as a success story. No longer did he say that he wanted to kill himself when he came home from school. For us, even with my skepticism, Ritalin was working! My decision was to use Ritalin if it improved Jared's quality of life and it seems to be doing the job, however, we do take it on a day by day basis, and if ever it seems that it is no longer working or if Jared gets to an age where he doesn't want to take it anymore, we will discontinue with Ritalin.
Back to the Fair; while the kids were playing on the playground, they wanted to go on the trampoline and there was a sign in front of it that said: Only one child at a time, shoes must be removed and parents need to supervise their children. Well, I was telling the boys that they had to take their shoes off and Nathan had to wait as there was only one child allowed to jump at a time. The attendant overheard my conversation and said, "Good job Mom! You are the first mom to actually read the sign and follow the directions.!" She continued to explain to me how she was frustrated by the parents of today who don't follow directions and how they do whatever it is they want. I got into a conversation with her that we always have to be one thought process ahead of Jared and steer him in a direction before he actually wants to do something (eg: jump on the trampoline with his shoes or his brother) because he has Aspergers and ADHD. She then asked what we were doing for the ADHD and I said that I had him on Ritalin, and there it came, the litany of "Oh my gosh....Why would you put him on Ritalin...Didn't I know that it would make him sterile...yada yada yada."
It makes me upset when people try to force their views on me. It took me about a month or so to make the decision to put him on Ritalin and then about a month or so to analyze the effects and come to the determination that if it improved his quality of life that was acceptable. So, it makes me mad when people make judgements about something which I've consulted Psychologists, Cardiologists, and Pediatricians about and who have all assured me that the Benefits outweigh the costs!!!
To give you the history, Jared is on Ritalin for his ADHD. I really had trouble putting him on drugs for a diagnosis of ADHD but at the time he was coming home from kindergarten saying he wanted to kill himself and he hated school and he was stupid. At first, I thought he was just using the phrase loosely and didn't know what he was really saying but he went through this every single night after school and he was getting bad reports as far as his behavior. After going through the month of December with my kindergartner saying he wanted to kill himself and pouring ketchup into bowls and pretending it was blood, I decided to give the teacher a call to express my concerns. Her thought was that Jared might have a chemical imbalance because he had a hard time focusing.
I always feared that Jared might be labeled with ADHD because he was extremely hard to manage as a toddler. He was always getting into things such that he was not allowed to enter my small kitchen because he would empty every single cupboard that he could reach onto the floor. I always suspected that teachers would think he was ADHD.
So, after I spoke with the teacher and a lot of testing and consultations with the school social worker, I felt it in my best interest to get a second opinion from an outside psychologist and months later and testing later, ADHD was confirmed and the only course of treatment from my psychologist was to put Jared on Ritalin which really terrified me. I had so many questions...what would the drug do to his body over the long haul? What if I decided to not put him on Ritalin? Would Jared come home every day wanting to kill himself if I didn't use Ritalin? How many years would he have to be on it? Can you just come off of it? Do you have to be weaned? So many questions. It was a very trying time, but my ultimate decision was to try it because Jared's mental health couldn't get any worse. I had to do something that would help him enjoy life and enjoy school.
I decided to put him on it and give it 2 months. If I didn't see an improvement, I would take him off. Well, we saw an improvement the first day! He was more focused in school, he was happier and he noticed a difference in himself. He had more self confidence and he tried harder in school. On Ritalin he was a success. Today the teachers refer to Jared as a success story. No longer did he say that he wanted to kill himself when he came home from school. For us, even with my skepticism, Ritalin was working! My decision was to use Ritalin if it improved Jared's quality of life and it seems to be doing the job, however, we do take it on a day by day basis, and if ever it seems that it is no longer working or if Jared gets to an age where he doesn't want to take it anymore, we will discontinue with Ritalin.
Back to the Fair; while the kids were playing on the playground, they wanted to go on the trampoline and there was a sign in front of it that said: Only one child at a time, shoes must be removed and parents need to supervise their children. Well, I was telling the boys that they had to take their shoes off and Nathan had to wait as there was only one child allowed to jump at a time. The attendant overheard my conversation and said, "Good job Mom! You are the first mom to actually read the sign and follow the directions.!" She continued to explain to me how she was frustrated by the parents of today who don't follow directions and how they do whatever it is they want. I got into a conversation with her that we always have to be one thought process ahead of Jared and steer him in a direction before he actually wants to do something (eg: jump on the trampoline with his shoes or his brother) because he has Aspergers and ADHD. She then asked what we were doing for the ADHD and I said that I had him on Ritalin, and there it came, the litany of "Oh my gosh....Why would you put him on Ritalin...Didn't I know that it would make him sterile...yada yada yada."
It makes me upset when people try to force their views on me. It took me about a month or so to make the decision to put him on Ritalin and then about a month or so to analyze the effects and come to the determination that if it improved his quality of life that was acceptable. So, it makes me mad when people make judgements about something which I've consulted Psychologists, Cardiologists, and Pediatricians about and who have all assured me that the Benefits outweigh the costs!!!
Tuesday, August 11, 2009
Challenges of the Morning Routine
Life has been challenging over the past week or so. Jared has been a challenge on a daily basis in terms of motivating him to transition to the things that I need him to transition to. Like this morning for example, I woke him up later than usual at 7 am. I know that sounds early but both my husband and I work and we take the kids to the YMCA day camp which actually is good for Jared, I think, it gets him away from the computer and TV and gets him socializing with other children which is tough for him. Anyways, I asked him what he wanted for breakfast and he said nothing. Well, he has to eat something because he takes Ritalin for his ADHD and the Ritalin suppresses his appetite, so if he doesn't eat a good breakfast, he pretty much doesn't eat for the day. When I tried to explain that he needed to eat something, he became even more obstinate about it. Everything seems to be a struggle and it really is draining and the worst part about it is, as he gets older and his behavior doesn't mesh with his age, people just think he is a defiant and a behavioral problem which is really frustrating because I think my husband and I are viewed as push overs which I know we are not. It's all very draining for me and I wonder what the teen years will be like.
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