I’m just coming off a rough four weeks with Nicky.
When I’m in the mist of the storm the best I can do is hold on tight, deal with what comes and wait for the things to settle down. After each storm, I slowly loosen my clinched fists, tight jaw and reflection follows.
Today reflection hit, and I found myself knowing that we learn the most when faced with adversity, not when things are going great. So from that perspective “not great” is still good.
Eight years into my Autism Journey I can look back and know what no one could have told me. The intense physical, financial and emotional challenges of; running a business, divorcing my husband of 17 years, caring for my children, being a single mom, coping every day with autism and it’s impact on every member of our family have been exactly the experiences I was meant to have, to become the person I am today.
Today as I sat at lunch with a wonderful woman (who I met as a part of my autism advocacy) I thought of my gifts. I thought about how if any events in my life, up to this moment had not happened, I would not be the women I am today. I would not be a bad person and most likely I would have had an okay life. But, not this life which really has made me happier, a better mom, a better friend, more aware of myself, able to care for myself, genuinely empathic of others, less judgmental, kinder, more accepting and more grateful for everything!!!!!
I compare myself to a box of crayons…I used to be a very nice 12 color box and now I’m a brighter, prettier 36 color box. If I keep up this pace I’ll be a spectacular 100 colors before my time is done.
Wednesday, April 29, 2009
Tuesday, April 28, 2009
OMG My Kids an Addict ! Video's Are Like Heroin for Nicky
According to Wikipedia... The term "addiction" is used in many contexts to describe an obsession, compulsion, or excessive psychological dependence, such as: drug addiction, video game addiction, crime, money, alcoholism, work addiction, compulsive overeating, problem gambling, computer addiction, pornography addiction, etc.
As if I didn’t have enough to deal with now I think Nicky is addicted to videos. Barney, Teletubbies, Blues Clues, Pooh Bear, Veggie Tales…whatever! They are like heroine for him. He obsesses so much about getting them some days he can’t think about anything else. Then when he get’s them, he’s okay for a minute, and then he’s in worst shape and wants more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
On a typical day first thing when he wakes up in the morning or comes home from school, in an rushed voice he says “Mom, Video’s? Big Bird Get’s Lost, Teletubbies, Barneys Big Adventure? If I have a calm body and a calm voice I can earn free time”.
I say “Yes, now stop repeating”.
Ten seconds later in a slighter higher pitch he says “Video’s!? Big Bird Get’s Lost, if I have a calm body and a calm voice I can earn free time. I can have video’s later”.
I say “Nicky look at me. It’s time to be sleeping, it’s not video time. We will talk about it in the morning”.
Immediately in a more frantic voice and only two inches from my face he says “Video’s!? Big Bird Get’s Lost? If I have a calm body and a calm voice I can earn free time. I can have videos later. We will talk about it later.”
I say nothing. Nicky throws a tantrum and we don’t talk about it later we talk about it NOW, because Nicky can’t stop talking about it. He follows me through the house repeating the same script over and over and I try to stay calm Using all of my best ABA skills I manage to interrupt the pattern with an activity or by feeding him. As soon as the activity is over or his mouth is empty, it begins again. He asks for videos and no matter how I respond it could elicit a slap, pinch or tantrum. Because he’s in his own world stuck in this thoughts about his videos.
On a good day he is able to stop talking about video's and participate for extended periods of time without mentioning them. On bad days he can't stop talking about it and there is no way to get him to stop until he goes to sleep.
Even then I am frequently awakened at 1:30 in the morning to a house where every light is on and cupboards and draws are open (it looks like the entire house had been ransacked) because Nicky was looking for a video, the remote control or an extension cord to plug in his VCR. He's on the prowl for his fix. He wants them, they are all he wants, he is furious when he can’t get them and he will do what he has to get them. YIKES!
When new people come over (including behavior therapists) they say, just let him watch the video, just give him a little bit. He’ll be okay. Not! When he get’s them it 's a Jeckle and Hyde thing. He sits happily for a little while watching, laughing looking like a typical child. Then he get’s a little more excited and he begins rewinding them, over and over and then WHAM… he get's too much exposure his nervous system get's out of whack ...Hyde appears and life is awful! He loses control he begins screaming, hitting, pinching, repeating, having tantrums and he can't be calmed down and it can last 24 hours.
So just like an addict he wants what he wants no matter the cost, he will sneak to get it and once he get’s it, it’s good for a few minutes and then it turns bad.
The behavior dilemma is that Nicky loves video’s. DVDs and videos are everywhere in the world so he has to learn how to deal with them and they are a great positive rein forcer to pull out behaviors we want. Even if we decided to take remove them from the house that would work. Remember the great escape when he took a video and when into different neighbor’s houses in search of a TV and VCR…naked with his blanket.
As a mom, I know they are his very favorite and with a kid who has so few passions it hurts to take it away. So, his behavior team has worked out our version of a 12 step program. Right now it includes a slow process of limited exposure to video’s for a designed period of time that he earns by not having any aggressive behavior. We are also working every day to expand his interest so he can choose for more activities and teaching him how to express his feelings before he implodes.
This is slow going, but going.
As if I didn’t have enough to deal with now I think Nicky is addicted to videos. Barney, Teletubbies, Blues Clues, Pooh Bear, Veggie Tales…whatever! They are like heroine for him. He obsesses so much about getting them some days he can’t think about anything else. Then when he get’s them, he’s okay for a minute, and then he’s in worst shape and wants more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
On a typical day first thing when he wakes up in the morning or comes home from school, in an rushed voice he says “Mom, Video’s? Big Bird Get’s Lost, Teletubbies, Barneys Big Adventure? If I have a calm body and a calm voice I can earn free time”.
I say “Yes, now stop repeating”.
Ten seconds later in a slighter higher pitch he says “Video’s!? Big Bird Get’s Lost, if I have a calm body and a calm voice I can earn free time. I can have video’s later”.
I say “Nicky look at me. It’s time to be sleeping, it’s not video time. We will talk about it in the morning”.
Immediately in a more frantic voice and only two inches from my face he says “Video’s!? Big Bird Get’s Lost? If I have a calm body and a calm voice I can earn free time. I can have videos later. We will talk about it later.”
I say nothing. Nicky throws a tantrum and we don’t talk about it later we talk about it NOW, because Nicky can’t stop talking about it. He follows me through the house repeating the same script over and over and I try to stay calm Using all of my best ABA skills I manage to interrupt the pattern with an activity or by feeding him. As soon as the activity is over or his mouth is empty, it begins again. He asks for videos and no matter how I respond it could elicit a slap, pinch or tantrum. Because he’s in his own world stuck in this thoughts about his videos.
On a good day he is able to stop talking about video's and participate for extended periods of time without mentioning them. On bad days he can't stop talking about it and there is no way to get him to stop until he goes to sleep.
Even then I am frequently awakened at 1:30 in the morning to a house where every light is on and cupboards and draws are open (it looks like the entire house had been ransacked) because Nicky was looking for a video, the remote control or an extension cord to plug in his VCR. He's on the prowl for his fix. He wants them, they are all he wants, he is furious when he can’t get them and he will do what he has to get them. YIKES!
When new people come over (including behavior therapists) they say, just let him watch the video, just give him a little bit. He’ll be okay. Not! When he get’s them it 's a Jeckle and Hyde thing. He sits happily for a little while watching, laughing looking like a typical child. Then he get’s a little more excited and he begins rewinding them, over and over and then WHAM… he get's too much exposure his nervous system get's out of whack ...Hyde appears and life is awful! He loses control he begins screaming, hitting, pinching, repeating, having tantrums and he can't be calmed down and it can last 24 hours.
So just like an addict he wants what he wants no matter the cost, he will sneak to get it and once he get’s it, it’s good for a few minutes and then it turns bad.
The behavior dilemma is that Nicky loves video’s. DVDs and videos are everywhere in the world so he has to learn how to deal with them and they are a great positive rein forcer to pull out behaviors we want. Even if we decided to take remove them from the house that would work. Remember the great escape when he took a video and when into different neighbor’s houses in search of a TV and VCR…naked with his blanket.
As a mom, I know they are his very favorite and with a kid who has so few passions it hurts to take it away. So, his behavior team has worked out our version of a 12 step program. Right now it includes a slow process of limited exposure to video’s for a designed period of time that he earns by not having any aggressive behavior. We are also working every day to expand his interest so he can choose for more activities and teaching him how to express his feelings before he implodes.
This is slow going, but going.
Sunday, April 26, 2009
The Autism "Evolution"
I never say "Why Me", when it comes to having a child with autism. But I have questioned why is there an epidemic, why has this happened to all these kids, what purpose does it serve in the grand scheme of things?
One day it hit me. Maybe our kids are here because it's time for society to take another leap forward. Maybe they are a part of our evolution. As a society we have tackled race, age, gender, sexuality, but not until the autism epidemic have we be asked to deal so intensely with our prejudices and bias’s around people with disabilities.
Unknowingly and graciously our children, each with a unique combination of gifts, challenges and individual personalities are changing how people see “ability” and “disability”. When I was a kid we just called the different kids "retards" and "Geeks". They were not included in our classrooms and we didn't even wonder who they were. We had no idea who they were or what they were capable of. We didn't ask and we didn't care.
My understanding as a kid was zero. That is not the case for the children in class with Nicky. He is included in a typical classroom, behaviors and all! He has forever changed the teachers and the children who work with him. Teachers thank me for letting him be in their class. They tell me that before Nicky they didn't know anything about autism and they love Nicky and they love knowing how wonderful these kids are and they never knew how smart they could be. They thank me for sharing him with the class and letting them all learn from him.
The children have had the opportunity to get to know Nicky and they have both questioned and marveled at the things he does better than they do (from puzzles to roller coasters) and they have embraced him as part of the community. The kids really do love him and look out for him. He has broken their "Retard" paradigm.
Year after year I have seen Nicky change how people think about children with developmental disabilities. I have seen Nicky be a catalyst breaking through ignorance and societal bias. I’ve seen him change lives as people came face to face with their ignorance. I believe that everyone with ASD on this planet is here for a purpose. Watching Nicky and his impact on the world I’ve come to believe that he is a critical part of human evolution.
So when I'm feeling down I will try and remember that Nicky has the gift of purpose. All of our kids have the gift our purpose. They are here to open our hearts and minds and expose our ignorance so we can all be better.
I believe each of our children are here to teach the world.
I believe each of our children are here to do something only they can do.
I believe that we were chosen as the ones to assist them.
One day it hit me. Maybe our kids are here because it's time for society to take another leap forward. Maybe they are a part of our evolution. As a society we have tackled race, age, gender, sexuality, but not until the autism epidemic have we be asked to deal so intensely with our prejudices and bias’s around people with disabilities.
Unknowingly and graciously our children, each with a unique combination of gifts, challenges and individual personalities are changing how people see “ability” and “disability”. When I was a kid we just called the different kids "retards" and "Geeks". They were not included in our classrooms and we didn't even wonder who they were. We had no idea who they were or what they were capable of. We didn't ask and we didn't care.
My understanding as a kid was zero. That is not the case for the children in class with Nicky. He is included in a typical classroom, behaviors and all! He has forever changed the teachers and the children who work with him. Teachers thank me for letting him be in their class. They tell me that before Nicky they didn't know anything about autism and they love Nicky and they love knowing how wonderful these kids are and they never knew how smart they could be. They thank me for sharing him with the class and letting them all learn from him.
The children have had the opportunity to get to know Nicky and they have both questioned and marveled at the things he does better than they do (from puzzles to roller coasters) and they have embraced him as part of the community. The kids really do love him and look out for him. He has broken their "Retard" paradigm.
Year after year I have seen Nicky change how people think about children with developmental disabilities. I have seen Nicky be a catalyst breaking through ignorance and societal bias. I’ve seen him change lives as people came face to face with their ignorance. I believe that everyone with ASD on this planet is here for a purpose. Watching Nicky and his impact on the world I’ve come to believe that he is a critical part of human evolution.
So when I'm feeling down I will try and remember that Nicky has the gift of purpose. All of our kids have the gift our purpose. They are here to open our hearts and minds and expose our ignorance so we can all be better.
I believe each of our children are here to teach the world.
I believe each of our children are here to do something only they can do.
I believe that we were chosen as the ones to assist them.
Wednesday, April 8, 2009
Anything But SEX!
I don’t like to talk about my son and sex. Some how in my brain I connected sexual issues with Nicky being grown up, which always seemed so far in the future. So I closed the door and avoided going there. I did a good job for years, but it seems that I can't ignore it anymore as the messages hit me daily. From the young man at the restaurant last week to the conversations last week with therapists, the message that surrounds me is "Nicky Is Growing up". Maybe it's because Nicky leaves the safe environment of his elementary school this year to begin middle school and I know the next phase, is now.
I remember when he was only 4 and I was sitting in a therapy waiting room - for social skills class - when a young man with ASD (about 14 years old) began opening magazines and pointing at the models breasts and screaming “boobs, boobs, tits” as he loudly laughed and jumped around the room. I froze, with my eyes like saucers praying that this would not be my path. His mom began speaking to another mom and they talked about how their kids had developed sexual obsessions. I think in that moment I said to myself “oh no, I’m not going there, anywhere but there!" and I took the conversation about sex and my son off the table.
A few years ago a friend told me that her 11 year old son with ASD had been sexually molested by a 14 year old boy with ASD. It was clear to me that she was traumatized by what had happened and was clutching to sanity as she tried to determine what to do next. How would she protect him in the future? How would she tell the other boys parents, who had recently adopted this boy? How would she talk to her son? How would she get help for her son? She did get him help and she was brave enough to get her entire family help. Later she told me about the wonderful sex education/safety classes she attended and recommended that I check them out.
I listened and I told her how great it was, but I knew I wasn’t ready, to face this topic head on. I just kept praying that I would not have to go there, at the same time I was thinking OMG how do I keep my son safe. Don’t we have enough challenges, now I have to be reminded of one more way our kids are vulnerable and cannot protect themselves.
Seems I can run, but I can't hide. This week I heard three stories about our kids and sex.
Story 1 One therapist said “There is a little girl with MR at school and she dress’s like Britney Spears. She is cute, but she looks provocative and she is a target for the boys and men, she can’t defend herself. I am afraid for her. I wish I could talk to her parents”
Story 2 A therapist who works at a middle school said “One of the girls in my special day class at school has a boy friend they both have serious developmental disabilities and I think they are having sex. I asked the mom about birth control and she does not think it is right for her daughter. She thinks their relationship is cute she is happy her daughter has someone. What about the baby they might create that these kids can’t care for?”
Story 3 A different therapist reported. A dad of a boy with ASD asked me about his son. He said that his son had begun masturbating and he just well, couldn't get the job done. He didn’t know what to do. So he wanted to know if he should teach him to finish the job? The therapist said “NO” would you teach your typical son that?
So, I get it. We are all struggling to figure this out. We are all doing the best we can to cling on to whatever version of reality that helps us get through the days. But right now I'm hearing that I can’t run forever. Yes, it's tough because I'm a single mom and I think this is a job for a dad. Yes, it's natural for this to be that “private” stuff our children work out as they become independent adults and I don't know if I can handle this unnatural part of parenting a child who is also a young man. The caregiver role is clearly defined for our small children, but not so clearly defined for children adults with developmental disabilities who only partially grow up, who we may parent forever. It is unnatural and awkward for me. Nonetheless it seems I will have to find the courage to get past my discomfort and get involved. Wish me luck.
I remember when he was only 4 and I was sitting in a therapy waiting room - for social skills class - when a young man with ASD (about 14 years old) began opening magazines and pointing at the models breasts and screaming “boobs, boobs, tits” as he loudly laughed and jumped around the room. I froze, with my eyes like saucers praying that this would not be my path. His mom began speaking to another mom and they talked about how their kids had developed sexual obsessions. I think in that moment I said to myself “oh no, I’m not going there, anywhere but there!" and I took the conversation about sex and my son off the table.
A few years ago a friend told me that her 11 year old son with ASD had been sexually molested by a 14 year old boy with ASD. It was clear to me that she was traumatized by what had happened and was clutching to sanity as she tried to determine what to do next. How would she protect him in the future? How would she tell the other boys parents, who had recently adopted this boy? How would she talk to her son? How would she get help for her son? She did get him help and she was brave enough to get her entire family help. Later she told me about the wonderful sex education/safety classes she attended and recommended that I check them out.
I listened and I told her how great it was, but I knew I wasn’t ready, to face this topic head on. I just kept praying that I would not have to go there, at the same time I was thinking OMG how do I keep my son safe. Don’t we have enough challenges, now I have to be reminded of one more way our kids are vulnerable and cannot protect themselves.
Seems I can run, but I can't hide. This week I heard three stories about our kids and sex.
Story 1 One therapist said “There is a little girl with MR at school and she dress’s like Britney Spears. She is cute, but she looks provocative and she is a target for the boys and men, she can’t defend herself. I am afraid for her. I wish I could talk to her parents”
Story 2 A therapist who works at a middle school said “One of the girls in my special day class at school has a boy friend they both have serious developmental disabilities and I think they are having sex. I asked the mom about birth control and she does not think it is right for her daughter. She thinks their relationship is cute she is happy her daughter has someone. What about the baby they might create that these kids can’t care for?”
Story 3 A different therapist reported. A dad of a boy with ASD asked me about his son. He said that his son had begun masturbating and he just well, couldn't get the job done. He didn’t know what to do. So he wanted to know if he should teach him to finish the job? The therapist said “NO” would you teach your typical son that?
So, I get it. We are all struggling to figure this out. We are all doing the best we can to cling on to whatever version of reality that helps us get through the days. But right now I'm hearing that I can’t run forever. Yes, it's tough because I'm a single mom and I think this is a job for a dad. Yes, it's natural for this to be that “private” stuff our children work out as they become independent adults and I don't know if I can handle this unnatural part of parenting a child who is also a young man. The caregiver role is clearly defined for our small children, but not so clearly defined for children adults with developmental disabilities who only partially grow up, who we may parent forever. It is unnatural and awkward for me. Nonetheless it seems I will have to find the courage to get past my discomfort and get involved. Wish me luck.
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