Dear Guts of the Past,
Just wanted to let you know that, although the watch seemed like the perfect gift for Spirit, I would suggest not putting one in his stocking for the following reasons: Reason #1 - I know that you think his obsession with time will be subsided by knowing the time...it won't, in fact as he asks you minute by minute how much time is left in Sacrament Meeting, then checks your math against his watch, just remember I warned you. Reason #2 - You seem to have forgotten that he has HFA and new things in his circle become one of two things either his new obsession, or his new annoyance...this one actually becomes both, first he is obsessed with getting the time right and either correcting the watch or the clock he is looking at, then the watch becomes an annoyance on his wrist. So save yourself the trouble genius and don't buy the watch.
Sunday, December 25, 2011
Monday, December 12, 2011
A Visit To the Museum With the Tasmanian Devil
Last night we decided to go to Temple Square and see the lights. We arrived early and were pleasantly surprised to find that there was a children's exhibit being featured at the Church History Museum. We decided to kill some time there before the lights came on. The cute little missionary at the front desk pointed us to the children's exhibit so I made a beeline for the escalator. Spirit looked at me with those "How many times are we going to go through this Dad," eyes, and headed for the elevator. Because if there is an elevator, we're gonna use it. I didn't want to risk a meltdown so I put up little resistance in using the elevator. After a quick ride up the elevator the bedlam fun began.
Spirit found every camera, computer, and interactive activity they had. In about 12.23 seconds. Then we got fixated on the ship and the fishing. Nothing else could be done until we had fished from off of the fake Nephi ship. This was one of the most popular attractions, making it a line waiting situation. Spirit isn't too keen on lines, especially when there isn't really a line and it is more of a turn-taking situation. This is hard for Spirit for a couple of reasons the first being that he can't really read the situation so it is hard for him to see that things may be wrapping up for a set of kids, and secondly he isn't the most patient of people.
So here we have a situation with very little predictability and one that requires Spirit to read the clues of others. Yeah you can see the frustration coming from a mile away. Luckily this frustration was a little less exaggerated than we have experienced in other situations, but it was there still the same. Luckily we got done with the fishing, the one attraction that Spirit was willing to spend some time on, and headed off to experience the rest of the museum. We covered that in about an additional 6.27 seconds and were out the door to look at the lights.
In Spirit's mind everything is a race back to normalcy. I feel like anytime I take him away from the routine it is only a matter of time before we have to get back to his box. It's like there is a timer that begins as soon as we leave the car, and the little timer tells Spirit when he has to be back to normal. I can add to or take away from that time based on the engagement or discomfort. Show him something he likes, I may get another 10 - 12 seconds, get him uncomfortable and I just lost 2 - 3 minutes. This is all based on the frustration gauge. It would be nice if this gauge could be worn like a watch where I could just ask Heart, "Hey check the gauge and see if we can afford to go here or go there." Unfortunately it doesn't work that way.
Thus, by the time that we reached Temple Square for a perusal of the lights we were on about 5 minutes tops. And we covered the entire grounds in about that flat. Then it was off to the car and back to the normalcy box.
I must admit that having a name for why Spirit reacts the way he does is helpful. But one thing is for sure, Heart and I still have a lot to learn.
Spirit found every camera, computer, and interactive activity they had. In about 12.23 seconds. Then we got fixated on the ship and the fishing. Nothing else could be done until we had fished from off of the fake Nephi ship. This was one of the most popular attractions, making it a line waiting situation. Spirit isn't too keen on lines, especially when there isn't really a line and it is more of a turn-taking situation. This is hard for Spirit for a couple of reasons the first being that he can't really read the situation so it is hard for him to see that things may be wrapping up for a set of kids, and secondly he isn't the most patient of people.
So here we have a situation with very little predictability and one that requires Spirit to read the clues of others. Yeah you can see the frustration coming from a mile away. Luckily this frustration was a little less exaggerated than we have experienced in other situations, but it was there still the same. Luckily we got done with the fishing, the one attraction that Spirit was willing to spend some time on, and headed off to experience the rest of the museum. We covered that in about an additional 6.27 seconds and were out the door to look at the lights.
In Spirit's mind everything is a race back to normalcy. I feel like anytime I take him away from the routine it is only a matter of time before we have to get back to his box. It's like there is a timer that begins as soon as we leave the car, and the little timer tells Spirit when he has to be back to normal. I can add to or take away from that time based on the engagement or discomfort. Show him something he likes, I may get another 10 - 12 seconds, get him uncomfortable and I just lost 2 - 3 minutes. This is all based on the frustration gauge. It would be nice if this gauge could be worn like a watch where I could just ask Heart, "Hey check the gauge and see if we can afford to go here or go there." Unfortunately it doesn't work that way.
Thus, by the time that we reached Temple Square for a perusal of the lights we were on about 5 minutes tops. And we covered the entire grounds in about that flat. Then it was off to the car and back to the normalcy box.
I must admit that having a name for why Spirit reacts the way he does is helpful. But one thing is for sure, Heart and I still have a lot to learn.
Saturday, December 10, 2011
Unanswerable Questions
As the hours have turned into days, and I begin to connect the dots about Spirit's autism. I am beginning to have some frank conversations with my Heavenly Father. I do have to admit that it is mostly venting and He is a very good listener. So I ask the questions, not really expecting and answer, and knowing that all will be made known to Heart and I when the time is right. So here they are in no particular order:
Why Us? I'm not saying it in some pity party poor me kind of way. I know I have a Heavenly Father that knows all, and is in control of this ship. I get it. So why us? Did we choose him? Did he choose us? Did Heavenly Father just let it happen or did it happen as a result of something?
Why Him? Of all the people, in all the world, and of the other 70 boys that don't have to deal with this disorder, why him.
Who is he really? Without the limitations, the lack of emotion, and lack of environmental awareness. Who is he? Does he love basketball? Is he good at it? Does he play the guitar? Is he shy and reserved like his mom, or is he loud and obnoxious like his dad?
Where does his autism end and his agency begin? I think this has been the most perplexing of questions for me. How do I teach him to make right choices? How does the atonement work for him? Can one truly feel penitent when you can't really understand how someone else is feeling?
I know that someday we will sit down with our Heavenly Father and get to hammer all of this out, and I know that for right now we have to have faith that he knows what's best for all of us. So for now I will focus on a vision, whether I had it while I was sleeping or awake I can't really tell.
It's a vision of two brothers waiting in white robes in the pre-existense waiting for their calls and assignments. I don't know if their calls were delivered together or apart, but the realization quickly falls on them that they will be assigned to the same part of the world, in fact they will be in the same family. One a father and the other the son. I can't see the rest of the story because it all becomes a little blurry, but I know this, in the call the son realizes that he will come to this Earth with some limitations and some talents, as we all do, his though will be just a little more limiting. Tears well up in the son's eyes and the father embraces his brother and friend, that will soon be his son, and simply says: "Best Buds Forever and Ever."
It was a promise I made many many years ago and regardless of the never ending waves of unanswerable questions, I will forever have Spirit's back, and although he may look back and think we saved him. In the end I believe it will be him that saves us.
Why Us? I'm not saying it in some pity party poor me kind of way. I know I have a Heavenly Father that knows all, and is in control of this ship. I get it. So why us? Did we choose him? Did he choose us? Did Heavenly Father just let it happen or did it happen as a result of something?
Why Him? Of all the people, in all the world, and of the other 70 boys that don't have to deal with this disorder, why him.
Who is he really? Without the limitations, the lack of emotion, and lack of environmental awareness. Who is he? Does he love basketball? Is he good at it? Does he play the guitar? Is he shy and reserved like his mom, or is he loud and obnoxious like his dad?
Where does his autism end and his agency begin? I think this has been the most perplexing of questions for me. How do I teach him to make right choices? How does the atonement work for him? Can one truly feel penitent when you can't really understand how someone else is feeling?
I know that someday we will sit down with our Heavenly Father and get to hammer all of this out, and I know that for right now we have to have faith that he knows what's best for all of us. So for now I will focus on a vision, whether I had it while I was sleeping or awake I can't really tell.
It's a vision of two brothers waiting in white robes in the pre-existense waiting for their calls and assignments. I don't know if their calls were delivered together or apart, but the realization quickly falls on them that they will be assigned to the same part of the world, in fact they will be in the same family. One a father and the other the son. I can't see the rest of the story because it all becomes a little blurry, but I know this, in the call the son realizes that he will come to this Earth with some limitations and some talents, as we all do, his though will be just a little more limiting. Tears well up in the son's eyes and the father embraces his brother and friend, that will soon be his son, and simply says: "Best Buds Forever and Ever."
It was a promise I made many many years ago and regardless of the never ending waves of unanswerable questions, I will forever have Spirit's back, and although he may look back and think we saved him. In the end I believe it will be him that saves us.
Friday, December 9, 2011
To Diagnose or Not To Diagnose
Wow, one week into this crazy ride and Heart and I are reeling. I've spent massive amounts of time on every website I can think to plug into Google. See the links on the right for the information I have been pouring through. I feel overwhelmed, I feel behind, I feel like I have to catch up to nine years of doing this parenting thing all wrong.
Medical diagnosis would only confirm what Heart and I already know. It's either HFA or AS and either way we are in for one crazy ride. Spirit is being Spirit, he's finding new Legos to focus on and new cartoons to add to his bank for playing with his action figures. Two of the major signs of HFA and AS being focus on object oriented toys and not being able to play in one's imagination.
I think we are leaning toward not medically diagnosing Spirit and just treating the behaviors that we can identify. It's not like a medical diagnosis would do anything in the way of assisting us with treating him which brings me to another point:
Dear Utah Legislators,
YOU SUCK!
Love,
Any Parent that wants to treat their child with Autism
P.S. Did I mention YOU SUCK!
Utah is one of the states that doesn't require insurance companies to cover autism in their insured disorders. Not much more to say other then get it done Utah.
I think that HFA or AS is kind of like a cruel prank. You think your kid is normal, and based on everything you can observe up to a certain age he or she is, then things start to happen and you feel like the asthmatic kid trying to run the mile and a half in under twelve minutes. Suddenly your friends come zooming by you and you realize that you just don't have the lung capacity to keep up. Spirit hasn't seen it, thank heaven, but the other kids are starting to lap him in certain areas. In other areas he excels and in most cases leads the pack, but there are still those other things lurking around the corner.
I can't think of a more frustrating way to discover that your child needs help. "Well sir we now know that your son has had this for close to six years, and had you known, well you probably would have done something about it, but since you didn't you have now lost those years forever, please pay the secretary in the foyer and we'll call you when that time machine is ready.
Meanwhile you head into the bathroom, not knowing whether to cry, puke, or punch a hole in the mirror, hoping that you can give the idiot in the reflection a black eye for all of the idiotic times you lost your temper, said something you shouldn't have, or expected more than he would ever be capable of being.
"And then the clouds opened up and God said, "I hate you Alfalfa."
Well Alfalfa I know where you are coming from, I just wish that the mortifying embarrassment of standing naked in front of Darla didn't have to affect Spirit so much.
Medical diagnosis would only confirm what Heart and I already know. It's either HFA or AS and either way we are in for one crazy ride. Spirit is being Spirit, he's finding new Legos to focus on and new cartoons to add to his bank for playing with his action figures. Two of the major signs of HFA and AS being focus on object oriented toys and not being able to play in one's imagination.
I think we are leaning toward not medically diagnosing Spirit and just treating the behaviors that we can identify. It's not like a medical diagnosis would do anything in the way of assisting us with treating him which brings me to another point:
Dear Utah Legislators,
YOU SUCK!
Love,
Any Parent that wants to treat their child with Autism
P.S. Did I mention YOU SUCK!
Utah is one of the states that doesn't require insurance companies to cover autism in their insured disorders. Not much more to say other then get it done Utah.
I think that HFA or AS is kind of like a cruel prank. You think your kid is normal, and based on everything you can observe up to a certain age he or she is, then things start to happen and you feel like the asthmatic kid trying to run the mile and a half in under twelve minutes. Suddenly your friends come zooming by you and you realize that you just don't have the lung capacity to keep up. Spirit hasn't seen it, thank heaven, but the other kids are starting to lap him in certain areas. In other areas he excels and in most cases leads the pack, but there are still those other things lurking around the corner.
I can't think of a more frustrating way to discover that your child needs help. "Well sir we now know that your son has had this for close to six years, and had you known, well you probably would have done something about it, but since you didn't you have now lost those years forever, please pay the secretary in the foyer and we'll call you when that time machine is ready.
Meanwhile you head into the bathroom, not knowing whether to cry, puke, or punch a hole in the mirror, hoping that you can give the idiot in the reflection a black eye for all of the idiotic times you lost your temper, said something you shouldn't have, or expected more than he would ever be capable of being.
"And then the clouds opened up and God said, "I hate you Alfalfa."
Well Alfalfa I know where you are coming from, I just wish that the mortifying embarrassment of standing naked in front of Darla didn't have to affect Spirit so much.
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