As we get ready to go see the autism specialists out of Denver I am realizing just how much work we have ahead of us. It's not going to be easy but, I do think it is necessary. We owe this chance to Jonathon in order to give him the best chance at a fullfilling life.
One of the overall goals we have, as a family, for Jonathon is for him to increase his independence. We are not a household that is strictly structured. We do our activities of daily living everyday, but we do not have them written down to occur at a specific time. Which I don't want to be so locked into a schedule that we can't make changes without a melt down. I think there is a balance to be found there.
As we've been preparing for our visit to the specialists I've asked myself "do we need a tighter structured day?" My answer is... "Yes." My response to that is "God please help me to take it one step at a time and not feel overwhelmed by the tasks ahead!" Why do I think we need more structure? Because currently Jonathon is not able to move through his day without constant requests and reminders about what he should be doing and when. It is US moving him through his day. I don't want to have to keep doing that. I want him to take on some of the responsibility for his daily life activities. Not only to ease the load on me but to give him self confidence and independence. Plus, he gets very tired of hearing me or Tim say "Jonathon, come here. Do this, do that." Who can blame him! I'd get sick of hearing someone constantly saying "come here, come here, come here!" His response of, "Oh, all right Vickie. What do you want now?!" attitude says it all!
I really do want us to be successful in this venture, so instead of looking at the entire job ahead, I'm going to take it a bit at a time. I'd rather move slowly and be successful than move too fast and fail.
I'm sure you will hear about our progress as we go!! Wish us luck!
Friday, December 30, 2011
Balance
Wow! I didn't realize it's been so long since I posted! Ooops! Just been busy with the holidays.
Last night Jonathon was getting ready for his bath when he made a request. I don't remember his exact wording, but his request was something like, I like that t.v and vcr in my bedroom. I responded "you want a t.v. and vcr in your bedroom?" "Yep." "Why?" "Because I like that t.v, vcr. You and Daddy Tim have a t.v., vcr in your bedroom." "Yes, we do. You think you need one in yours?" "Yep."
Here's the dilemma... he is 21 years old now, so as an adult he has a right to make that request. My concern is developmentally he is around five years old and I'm afraid he would be up in the middle of the night watching movies. He already has sleeping difficulties. I am leaning toward letting him have it because he is an adult, and the autism has taken away his ability to make so many other decisions regarding his life. Plus, for him to realize he has a "want" and to voice that desire to me is HUGE PROGRESS! Out of the blue he made this request and I don't think it's an unreasonable request. By letting him have it, it will put more on Tim and I. We will have to monitor his use, both in the day and the night. During the day, I could see him camping out in his room never to be seen and, at night when he's restless, I could see him staying up all night watching t.v. instead of getting back to sleep. I guess it all boils down to structuring the use of the equipment, setting expectations up front and enforcing them. His birthday is in March so maybe that's what we will get him for his b-day gift. That gives me a couple months to think about how to structure this so he can have what he wants and be successful in using it.
Last night Jonathon was getting ready for his bath when he made a request. I don't remember his exact wording, but his request was something like, I like that t.v and vcr in my bedroom. I responded "you want a t.v. and vcr in your bedroom?" "Yep." "Why?" "Because I like that t.v, vcr. You and Daddy Tim have a t.v., vcr in your bedroom." "Yes, we do. You think you need one in yours?" "Yep."
Here's the dilemma... he is 21 years old now, so as an adult he has a right to make that request. My concern is developmentally he is around five years old and I'm afraid he would be up in the middle of the night watching movies. He already has sleeping difficulties. I am leaning toward letting him have it because he is an adult, and the autism has taken away his ability to make so many other decisions regarding his life. Plus, for him to realize he has a "want" and to voice that desire to me is HUGE PROGRESS! Out of the blue he made this request and I don't think it's an unreasonable request. By letting him have it, it will put more on Tim and I. We will have to monitor his use, both in the day and the night. During the day, I could see him camping out in his room never to be seen and, at night when he's restless, I could see him staying up all night watching t.v. instead of getting back to sleep. I guess it all boils down to structuring the use of the equipment, setting expectations up front and enforcing them. His birthday is in March so maybe that's what we will get him for his b-day gift. That gives me a couple months to think about how to structure this so he can have what he wants and be successful in using it.
Sunday, December 11, 2011
Larry
Jonathon has been asking to go see the movie 'Tower Heist' for quite some time now. I've avoided it because of why he wants to see it. He likes Ben Stiller, who played "Larry" in 'A Night At The Museum.' Jonathon thinks "Larry" will be in the movie 'Tower Heist!' I've tried to explain that his name is really Ben Stiller and he is playing a different character, but it just hasn't connected with Jonathon.
Last night we decided to take him to see 'Tower Heist.' I was a little worried that he would not sit still and be quiet once he found out it was not "Larry." He did surprisingly well! The first part of the movie when they are setting the plot gave him a bit of trouble and he talked but not too bad. Throughout the movie when anyone called Ben Stiller "Josh" (his name in this movie) Jonathon would quietly say "Larry." LOL!!
I'm proud of Jonathon for sitting and watching a grown up movie even when it was different than what he was expecting. Once the real action started in the movie Jonathon really got into it! He was cheering the characters on, throwing punches when they fought, and laughed (a forced laugh - which is typical for him. He doesn't understand humor so he goes off what others are doing.) when the rest of the movie goers laughed. I see this experience as progress! I don't know that he realizes Ben Stiller plays different characters, but that's ok. It may come with time.
Last night we decided to take him to see 'Tower Heist.' I was a little worried that he would not sit still and be quiet once he found out it was not "Larry." He did surprisingly well! The first part of the movie when they are setting the plot gave him a bit of trouble and he talked but not too bad. Throughout the movie when anyone called Ben Stiller "Josh" (his name in this movie) Jonathon would quietly say "Larry." LOL!!
I'm proud of Jonathon for sitting and watching a grown up movie even when it was different than what he was expecting. Once the real action started in the movie Jonathon really got into it! He was cheering the characters on, throwing punches when they fought, and laughed (a forced laugh - which is typical for him. He doesn't understand humor so he goes off what others are doing.) when the rest of the movie goers laughed. I see this experience as progress! I don't know that he realizes Ben Stiller plays different characters, but that's ok. It may come with time.
Friday, December 9, 2011
Alive!
I was in Jonathon's bedroom this morning putting clothes away when he sat up in bed and exclaimed "HEY! I'M ALIVE! And so are you Vickie!" He sounded a little surprised as well as elated!
Ever since the dentist put him to sleep to do some dental work a couple years ago Jonathon thinks the dentist killed him. I'm not sure how he thinks if he was dead that he could come back. That's still a mystery. The dental event plus the deaths in our family have him very aware/afraid of death, but obviously we're still a bit confused! Such a hard concept to teach and to understand!
Ever since the dentist put him to sleep to do some dental work a couple years ago Jonathon thinks the dentist killed him. I'm not sure how he thinks if he was dead that he could come back. That's still a mystery. The dental event plus the deaths in our family have him very aware/afraid of death, but obviously we're still a bit confused! Such a hard concept to teach and to understand!
Monday, December 5, 2011
Christmas Spirit
It may be safest for me to stay out of the stores with Jonathon until after the holidays. Some people irritate the living daylights out of me!
One of the most beautiful things about Jonathon is his innocence. He doesn't see people as poor or rich, dirty or clean, Christian or Muslim... he sees a person, who no matter what, he wants to have an interaction with. Last year Jonathon greeted everyone with "HAPPY CHRISTMAS!" This year he has been greeting everyone with "HAPPY HOLIDAYS!" These greetings have been his choosing. I am not going to tell him not to greet people with something as innocent as a holiday greeting because they think he's weird or some people (Christians) don't want to hear "Happy Holidays." His greeting has nothing to do with a person's beliefs.
I might be more understanding of people (since autism is considered an invisible disability) EXCEPT he wears a badge that says "PLEASE BE PATIENT I HAVE AUTISM!"
Maybe we just keep running into illiterate people? Or maybe people could learn a huge lesson from him in acceptance and kindness. I know there are people, who he has greeted, who walk away from him and he has touched their lives, and all it took was a holiday greeting.
One of the most beautiful things about Jonathon is his innocence. He doesn't see people as poor or rich, dirty or clean, Christian or Muslim... he sees a person, who no matter what, he wants to have an interaction with. Last year Jonathon greeted everyone with "HAPPY CHRISTMAS!" This year he has been greeting everyone with "HAPPY HOLIDAYS!" These greetings have been his choosing. I am not going to tell him not to greet people with something as innocent as a holiday greeting because they think he's weird or some people (Christians) don't want to hear "Happy Holidays." His greeting has nothing to do with a person's beliefs.
I might be more understanding of people (since autism is considered an invisible disability) EXCEPT he wears a badge that says "PLEASE BE PATIENT I HAVE AUTISM!"
Maybe we just keep running into illiterate people? Or maybe people could learn a huge lesson from him in acceptance and kindness. I know there are people, who he has greeted, who walk away from him and he has touched their lives, and all it took was a holiday greeting.
Sunday, December 4, 2011
Cycles
Jonathon has been a cycler for as long as I can remember. We see an increase in aggression in the Fall and the Spring. What I have just become aware of, or been able to see the pattern of, is when Jonathon is not in the cycle of increased aggression we have an increase in obsessive behaviors. His verbal stimming/echolalia (obsessively repeating parts of movie phrases) increases significantly.
I know he's trying to regulate himself but why the cycling? It's either on the edge of blowing to full blow ups or the verbal stimming, which can lead to safety concerns. He gets into such a "zone" when he's verbally stimming that I've had to run and grab him before he was hit by a car in a parking lot. He completely blocks out the world while stimming. He will plug his ears so he can't hear anything else around him.
I'm hoping that once we start working with the autism specialists out of Denver they will be able to help pinpoint more of the "why" of his cycling. We've been able to identify his cycles, but now we want to know how to help him regulate himself in a more consistent manner.
The verbal stimming is obviously the better option compared to the physical aggression. I just worry about his safety while he is blocking out the world in order to cope.
It can be very puzzling trying to figure out the "whys" of autism!
I know he's trying to regulate himself but why the cycling? It's either on the edge of blowing to full blow ups or the verbal stimming, which can lead to safety concerns. He gets into such a "zone" when he's verbally stimming that I've had to run and grab him before he was hit by a car in a parking lot. He completely blocks out the world while stimming. He will plug his ears so he can't hear anything else around him.
I'm hoping that once we start working with the autism specialists out of Denver they will be able to help pinpoint more of the "why" of his cycling. We've been able to identify his cycles, but now we want to know how to help him regulate himself in a more consistent manner.
The verbal stimming is obviously the better option compared to the physical aggression. I just worry about his safety while he is blocking out the world in order to cope.
It can be very puzzling trying to figure out the "whys" of autism!
Thursday, December 1, 2011
Affection
The other day Jonathon and I stopped by my brother's house to see how he was doing since he had to work on Thanksgiving and didn't come home to our parent's house the day after. This would be my brother Richard whose daughter, Kimberley died this summer.
As Richard, Alison (Kimberley's sister) and I were visiting, Jonathon came up to his Uncle Richard and started rubbing/scratching his back. I was quite surprised as Jonathon doesn't just touch people. In fact, if people touch him he's worried that they have contaminated him with their germs!
Jonathon doesn't have the verbal skills to say "I'm sorry for the pain you have in your heart" but somehow he fought through his autism that day to reach out to my brother. It was one of those moments when I realized that somewhere in that beautiful autistic mind he can have more understanding than what is apparent.
I love those moments... when he reaches out from his autism and touches our lives with such great impact.
As Richard, Alison (Kimberley's sister) and I were visiting, Jonathon came up to his Uncle Richard and started rubbing/scratching his back. I was quite surprised as Jonathon doesn't just touch people. In fact, if people touch him he's worried that they have contaminated him with their germs!
Jonathon doesn't have the verbal skills to say "I'm sorry for the pain you have in your heart" but somehow he fought through his autism that day to reach out to my brother. It was one of those moments when I realized that somewhere in that beautiful autistic mind he can have more understanding than what is apparent.
I love those moments... when he reaches out from his autism and touches our lives with such great impact.
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