I have decided to write 2 days a week instead of every night. I don't want to lose anyone who is interested in reading because my posts may seem less interesting than they did in the beginning days of my blog. I will be back on Friday night to begin fresh.
So come back on Saturday morning!! Thanks so much for all the emails and support, I appreciate it more than you know! See ya Saturday
Wednesday, January 13, 2010
Tuesday, January 12, 2010
Day #17
Tonight I won't be writing much..... it has been a quiet day other than the door slamming 38 times. I hope that tonight's episodes of door slamming will be an isolated incident. We've had so many days in the last few months where all Max does is slam the door over and over for the majority of the night, all the while screaming or crying, tonight's bring those memories back. He did happily go out shopping with his respite worker this evening and had a good time. I got a chance to check my email.... I don't get a chance to get to the computer until everyone is sleeping
Jays counselor came over tonight as well. I am so thankful for Max's people and Jays people, I can't even put into words what they mean to me. They greet us with a smile and never seem in a rush to leave, its so nice to see friendly faces that enjoy our company. For those moments in time, things feel calmer.
I have been working a second job during part of the school day these past few days and it may continue long term, so tonight I have to catch up on things I didn't get done today, and won't get done tomorrow.
Thanks for continuing to read!
Until tomorrow....
Jays counselor came over tonight as well. I am so thankful for Max's people and Jays people, I can't even put into words what they mean to me. They greet us with a smile and never seem in a rush to leave, its so nice to see friendly faces that enjoy our company. For those moments in time, things feel calmer.
I have been working a second job during part of the school day these past few days and it may continue long term, so tonight I have to catch up on things I didn't get done today, and won't get done tomorrow.
Thanks for continuing to read!
Until tomorrow....
Monday, January 11, 2010
Day #16
"Its like Ground Hog Day"
I was racing around this morning, half confused about what I was doing. Letting dogs in and out, finding clothes for Max blah blah blah.... I dropped them both off to school than began a race to beat the clock finishing one job before I had to get to my other one. At some point today it dawned on me that my life is like that movie "Ground Hog Day"
Every morning I wake up and it feels like dejavu. There must be something in each day that I need to do differently, do better, do less... to get to a new day... a new day that doesn't look just like the one before. My list of things to do in a day is the same every day, day after day. No wonder I feel like a robot, no wonder I feel like I'm in a daze. Its the same day over and over, like the twilight zone. "Do not adjust your tv screen, you are about to enter the twilight zone" Hmmm.. I'm not sure if that's exactly how that show begins but you get my drift.
So in order for my boys and I to escape "Ground Hog Day" I think I must have to fix something about this day. The question is, what do I change, or fix? I can't break away from the routine, it upsets Max, that is to much to handle.
Tonight I upset the routine by taking him into McDonald's to eat in the Play Place... instead of eating he just wanted to sit at the bottom of the slide until the other children came sliding down, then he'd hurry up and move, running through the place to the doorway into the other dining area... stopping in the doorway and bending down to touch his feet, then the ground. Over and over he did this screaming "Wabu" as loudly as he could, all the other children watched him curiously as many people do. I figured the other children were loud, so I let him be loud. He just plays differently than the other kids do. Today however, I didn't have to spend any time explaining his behavior to anyone. It was kind of nice. Jay always sits idly by ready to be the information giver to anyone who looks at us cross eyed, this time he didn't have to say anything.
Tonight Max would eat nothing, but the frosting off a donut, he went to sleep at 10:30 uninterested in anything but his blankets.
I still believe that variety is the spice of life, and we are lacking variety. I think I'll explore bringing more variety into our day and see how Max handles it. Maybe if I do that we could escape this repeating day.
Today I remembered that my glass was still half full, and that's a good thing..I think it just needs to be filled with something different sometimes. I have always been full of wonder lust...used to get me in trouble in my younger days, I feel like I need to rent a red convertible, put the top down, everybodys seat belt on and just go, go somewhere new, do something new. I'm not sure if I'm as brave as I used to be unfortunately. Maybe I have spring fever, ants in my pants, a midlife crisis. I think its time for an adventure. It may be a few days before I can figure out what that adventure will be, but I'll let you know. Any suggestions?
Maybe the boredom over these really cold winter days is starting to get to my boys, both have seemed more easily agitated. That is hard for me to handle more often then not. I need to make them laugh more. How do I do that though.. when Max finds very few things funny. My mission is to find something new to do this weekend, I'll tell you about it then.
Until tomorrow.....
I was racing around this morning, half confused about what I was doing. Letting dogs in and out, finding clothes for Max blah blah blah.... I dropped them both off to school than began a race to beat the clock finishing one job before I had to get to my other one. At some point today it dawned on me that my life is like that movie "Ground Hog Day"
Every morning I wake up and it feels like dejavu. There must be something in each day that I need to do differently, do better, do less... to get to a new day... a new day that doesn't look just like the one before. My list of things to do in a day is the same every day, day after day. No wonder I feel like a robot, no wonder I feel like I'm in a daze. Its the same day over and over, like the twilight zone. "Do not adjust your tv screen, you are about to enter the twilight zone" Hmmm.. I'm not sure if that's exactly how that show begins but you get my drift.
So in order for my boys and I to escape "Ground Hog Day" I think I must have to fix something about this day. The question is, what do I change, or fix? I can't break away from the routine, it upsets Max, that is to much to handle.
Tonight I upset the routine by taking him into McDonald's to eat in the Play Place... instead of eating he just wanted to sit at the bottom of the slide until the other children came sliding down, then he'd hurry up and move, running through the place to the doorway into the other dining area... stopping in the doorway and bending down to touch his feet, then the ground. Over and over he did this screaming "Wabu" as loudly as he could, all the other children watched him curiously as many people do. I figured the other children were loud, so I let him be loud. He just plays differently than the other kids do. Today however, I didn't have to spend any time explaining his behavior to anyone. It was kind of nice. Jay always sits idly by ready to be the information giver to anyone who looks at us cross eyed, this time he didn't have to say anything.
Tonight Max would eat nothing, but the frosting off a donut, he went to sleep at 10:30 uninterested in anything but his blankets.
I still believe that variety is the spice of life, and we are lacking variety. I think I'll explore bringing more variety into our day and see how Max handles it. Maybe if I do that we could escape this repeating day.
Today I remembered that my glass was still half full, and that's a good thing..I think it just needs to be filled with something different sometimes. I have always been full of wonder lust...used to get me in trouble in my younger days, I feel like I need to rent a red convertible, put the top down, everybodys seat belt on and just go, go somewhere new, do something new. I'm not sure if I'm as brave as I used to be unfortunately. Maybe I have spring fever, ants in my pants, a midlife crisis. I think its time for an adventure. It may be a few days before I can figure out what that adventure will be, but I'll let you know. Any suggestions?
Maybe the boredom over these really cold winter days is starting to get to my boys, both have seemed more easily agitated. That is hard for me to handle more often then not. I need to make them laugh more. How do I do that though.. when Max finds very few things funny. My mission is to find something new to do this weekend, I'll tell you about it then.
Until tomorrow.....
Sunday, January 10, 2010
Day #15
"What would Max love to do?"
I often wonder what life would be like for Max if I could just figure out autism. Would he like playing football? Would he be a daredevil racing his bike down steep hills? Would he like reading mysteries, or writing like I do? Would he play guitar, piano, have an interest in science or history? What would his bedroom look like if he was able to pick out the decor, who would he claim as his best friend? Would he be the most popular, funniest or teachers pet at school? Would he love fruity pebbles, corn chex, apples or ice cream bars? Would he help elderly people cross the street? Would he love the Three Stooges or Stephen King? I wish I knew.
I know everyone who has children has enjoyed watching their children learn and grow, watching their personalities develop and their interests change. I get to watch Max learn and grow, his personality change and interests change.... just not the way parents of typical children do. The little steps are huge milestones for him. It took so many years to teach him how to put his socks on and to dress himself, but when he finally got it, it was huge. The day he finally understood the phrase "Put on your seat belt" was so exciting. The day he was able to fill up his own drink at the gas station was so liberating for him. Finally all these little things other kids could do, he could do. I am so proud of him for these steps toward independence, and I know he is proud of himself.
Our language barrier is the biggest feat of all. Max appears to understand alot of what you say to him (receptive language) Expressive language ( him talking) is where we struggle most of all. He can't tell me despite an obvious desire to get his point across so often. This is something we work on everyday, at school and at home. I know we will figure out somehow what works best for him. My Mom always says there is room in everyday for a miracle. We still search for Max's. I think the progress he has made thus far is a miracle. Lets keep praying, and working toward that day that he can tell me everything that's been trapped inside for all these years.
Until tomorrow....
I often wonder what life would be like for Max if I could just figure out autism. Would he like playing football? Would he be a daredevil racing his bike down steep hills? Would he like reading mysteries, or writing like I do? Would he play guitar, piano, have an interest in science or history? What would his bedroom look like if he was able to pick out the decor, who would he claim as his best friend? Would he be the most popular, funniest or teachers pet at school? Would he love fruity pebbles, corn chex, apples or ice cream bars? Would he help elderly people cross the street? Would he love the Three Stooges or Stephen King? I wish I knew.
I know everyone who has children has enjoyed watching their children learn and grow, watching their personalities develop and their interests change. I get to watch Max learn and grow, his personality change and interests change.... just not the way parents of typical children do. The little steps are huge milestones for him. It took so many years to teach him how to put his socks on and to dress himself, but when he finally got it, it was huge. The day he finally understood the phrase "Put on your seat belt" was so exciting. The day he was able to fill up his own drink at the gas station was so liberating for him. Finally all these little things other kids could do, he could do. I am so proud of him for these steps toward independence, and I know he is proud of himself.
Our language barrier is the biggest feat of all. Max appears to understand alot of what you say to him (receptive language) Expressive language ( him talking) is where we struggle most of all. He can't tell me despite an obvious desire to get his point across so often. This is something we work on everyday, at school and at home. I know we will figure out somehow what works best for him. My Mom always says there is room in everyday for a miracle. We still search for Max's. I think the progress he has made thus far is a miracle. Lets keep praying, and working toward that day that he can tell me everything that's been trapped inside for all these years.
Until tomorrow....
Saturday, January 9, 2010
Day #14
"Up all night"
Max had been up and down all night, finally getting up and staying up at 3:30am, which means I had less than 2 hours of sleep. This day has been very long and mentally draining. For some reason it seemed more draining than many other days in the not so distant past.
I spent most of the day feeling like I was sleepwalking, kind of giddy in a sense, but more than that I felt like I wasn't really here. Max spent most of the afternoon with Grandma so I could have slept but on Saturday afternoons Jay and I watch a movie before we go pick up Max at Grandmas. Grandma attempted to cut his hair today but he was not agreeable to it so she'd only gotten as far as cutting his bangs before he'd had enough. He spent most of the day tired much like I have. Max is not allowed to take naps, even just a 15 minute cat nap in the middle of the day will prevent him from sleeping during the night. I can't stay up all night two nights in a row, I'm not as young as I used to be. I'll be paying for last nights lack of sleep for days to come.
Max got very upset three times today, sobbing for over an hour the last time. I struggle with those episodes because I don't know what causes them or how to stop them. Big tears streamed down his precious face, that is always hard to see. I checked his head for a fever and he felt fine. If he is in pain I can usually tell. I have memorized all the different shades of crying he has. I know if its pain, anger, frustration based on the tone of his cries. This cry today is the mystery cry because it appears to have no cause and no solution.
When Max is in pain I can ask him to show me where it hurts and he will take my hand and put it where the pain is; head, stomach, arm or wherever. Anger cries just have to run their course. Frustration cries can be subsided if I know what is frustrating him and am able to fix it. He typically has those bouts of frustration when he is trying to do something by himself and he is unsuccessful. He loves the "Babes in Toyland" cartoon, but he wants to rewind it to a very precise frame in the movie, only one in ten times can he make it stop exactly where he wants it too, that always makes him so frustrated, I am not much help in that however.
We all want to hug our children when they are upset, but he doesn't really let you hug him when he's feeling bad, he takes me to the door and removes me from his tv room so he can be alone. Its so hard to not be able to console him, but doing so just makes his crying worse.
Despite having got up at 3:30am, Max didn't go to sleep until 11pm. So tonight I will hopefully sleep till dawn. I pray tonight that tomorrow will be a better, happier day.
Until tomorrow....
Max had been up and down all night, finally getting up and staying up at 3:30am, which means I had less than 2 hours of sleep. This day has been very long and mentally draining. For some reason it seemed more draining than many other days in the not so distant past.
I spent most of the day feeling like I was sleepwalking, kind of giddy in a sense, but more than that I felt like I wasn't really here. Max spent most of the afternoon with Grandma so I could have slept but on Saturday afternoons Jay and I watch a movie before we go pick up Max at Grandmas. Grandma attempted to cut his hair today but he was not agreeable to it so she'd only gotten as far as cutting his bangs before he'd had enough. He spent most of the day tired much like I have. Max is not allowed to take naps, even just a 15 minute cat nap in the middle of the day will prevent him from sleeping during the night. I can't stay up all night two nights in a row, I'm not as young as I used to be. I'll be paying for last nights lack of sleep for days to come.
Max got very upset three times today, sobbing for over an hour the last time. I struggle with those episodes because I don't know what causes them or how to stop them. Big tears streamed down his precious face, that is always hard to see. I checked his head for a fever and he felt fine. If he is in pain I can usually tell. I have memorized all the different shades of crying he has. I know if its pain, anger, frustration based on the tone of his cries. This cry today is the mystery cry because it appears to have no cause and no solution.
When Max is in pain I can ask him to show me where it hurts and he will take my hand and put it where the pain is; head, stomach, arm or wherever. Anger cries just have to run their course. Frustration cries can be subsided if I know what is frustrating him and am able to fix it. He typically has those bouts of frustration when he is trying to do something by himself and he is unsuccessful. He loves the "Babes in Toyland" cartoon, but he wants to rewind it to a very precise frame in the movie, only one in ten times can he make it stop exactly where he wants it too, that always makes him so frustrated, I am not much help in that however.
We all want to hug our children when they are upset, but he doesn't really let you hug him when he's feeling bad, he takes me to the door and removes me from his tv room so he can be alone. Its so hard to not be able to console him, but doing so just makes his crying worse.
Despite having got up at 3:30am, Max didn't go to sleep until 11pm. So tonight I will hopefully sleep till dawn. I pray tonight that tomorrow will be a better, happier day.
Until tomorrow....
Friday, January 8, 2010
Day #13
"We await tomorrow eagerly"
Tomorrow is the day Grandma comes to pick up Max for a few hours. He has been anxiously awaiting I'm sure. I'll pack the orange flowered bag in the morning and he instantly starts looking out the window for her little white car to pull up in front of the house.
Grandma is going to try to cut his hair tomorrow, a task that is near impossible, he is afraid of the scissors and it always starts a melt down. There comes a point however when we have to cut his hair anyway, it grows so fast and he has such thick hair.
Max has never.... yes I said never, in his 11 years, ever gone to to a barber shop for a haircut successfully. If you try to sit him in the barber chair he instantly panics and becomes combative, pushing, crying, trying to escape. It takes several people to hold him still, but is still impossible and given the fact that the barber has sharp scissors, it is to dangerous. So I haven't attempted it for a very long time. For the past several years I have been cutting his hair in his sleep, one side at a time. I usually get one side done on one night and the next side done the following night. He has spent many school days with half a haircut... we just grin and bear it. The teachers at school know how it works, and sometimes try to help.
I also clip his fingernails and toenails in his sleep. If something scares him, I do what I can to avoid the situation sometimes. He's been traumatized by the doctor already, why traumatize him with everything. I know there are some things that can't be avoided, but some situations can be put aside. I seem to modify most things these days. He is so strong I can't do alot of simple things for him without extra sets of hands, extra sets of hands that I don't have most of the time.
Tonight will be short as Max has woken up 5 times as I've tried to write this... tonight he is very restless. I don't know how much he will actually sleep tonight...and if I'll sleep at all. I started writing this at 8:30pm, it is now almost 1:30am and he is awake again. I'm holding my breath that he will go back to sleep, but it looks to be a very long night.
Until tomorrow....
Tomorrow is the day Grandma comes to pick up Max for a few hours. He has been anxiously awaiting I'm sure. I'll pack the orange flowered bag in the morning and he instantly starts looking out the window for her little white car to pull up in front of the house.
Grandma is going to try to cut his hair tomorrow, a task that is near impossible, he is afraid of the scissors and it always starts a melt down. There comes a point however when we have to cut his hair anyway, it grows so fast and he has such thick hair.
Max has never.... yes I said never, in his 11 years, ever gone to to a barber shop for a haircut successfully. If you try to sit him in the barber chair he instantly panics and becomes combative, pushing, crying, trying to escape. It takes several people to hold him still, but is still impossible and given the fact that the barber has sharp scissors, it is to dangerous. So I haven't attempted it for a very long time. For the past several years I have been cutting his hair in his sleep, one side at a time. I usually get one side done on one night and the next side done the following night. He has spent many school days with half a haircut... we just grin and bear it. The teachers at school know how it works, and sometimes try to help.
I also clip his fingernails and toenails in his sleep. If something scares him, I do what I can to avoid the situation sometimes. He's been traumatized by the doctor already, why traumatize him with everything. I know there are some things that can't be avoided, but some situations can be put aside. I seem to modify most things these days. He is so strong I can't do alot of simple things for him without extra sets of hands, extra sets of hands that I don't have most of the time.
Tonight will be short as Max has woken up 5 times as I've tried to write this... tonight he is very restless. I don't know how much he will actually sleep tonight...and if I'll sleep at all. I started writing this at 8:30pm, it is now almost 1:30am and he is awake again. I'm holding my breath that he will go back to sleep, but it looks to be a very long night.
Until tomorrow....
Thursday, January 7, 2010
Day # 12
"Another snow day to recover from"
We woke up this morning with the television screen scrolling *** schools cancelled... Mental break cancelled... unrest begins. What do you do on a day with 7 more inches of snow and the temperature well below freezing again? Its always such a desperate time for me. Why is it that the school day passes so quickly when the boys are in school, but it feels like a minute is an hour on a snow day?
Max was on his third bath before 10am. He did not appear to be unhappy thankfully. The hard thing is finding anything that he is interested in. Today he doesn't want to watch PBS, or movies. He doesn't want to interact with me, he just wants to sit in the bathtub or spin in his chair in the tv room. One of Max's respite workers came over today and brought pizza... the kind he likes but he wasn't interested.
We took 4 rides around town today, slippery roads, covered in snow, slush and ice, but Max was happy. Each time we passed the highway to Grandma's house he'd look at me with pleading eyes... I know what that look means, it means, "Take me to Grandmas"
I would happily have done so if the storm hadn't of made the roads such a mess, not to mention the impending 30 mile per hour winds and white out conditions that the weather men kept talking about.
We went to Walmart and bought play-doh, a less than adequate alternative when he wants to go to Grandmas and I can't.. but he is still content. He is calmer at her house. Less comotion, no dogs!! Not to mention he adores her. Grandma is the only person that can make him happy when I can't. With my tail between my legs I have to say that he would choose her over me anyday, whenever he has the choice he chooses Grandma. Who wouldn't choose their Grandma right?
I wish I could get him to build a snowman, or go sledding, but he doesn't like the cold snow on his hands even through gloves. Going down a hill on a sled would be terrifying for him. I would love to do those things with him, give him those memories to take with him through his life. At least he likes Frosty the Snowman the movie.
By 6pm today Max was so restless, pacing in the kitchen, slamming the bathroom door, slamming the front door. He was carrying around his blanket and pillow (that means take me to Grandmas house). I told him we couldn't go to Grandmas house because of the weather. Max instantly became very upset, slapping himself on the top of his head, stomping his feet, screaming. The screaming startles me so badly, my whole body jumps, my heart starts to beat faster, my hands start to shake. I am suddenly in panic mode, can't think straight, can't talk right, can't focus. I realized that I was pacing when he was screaming. I pace alot, back and forth, back and forth, I've probably walked a million miles in my kitchen. I wonder if I actually walked somewhere instead of pacing... where I'd end up.... down the road, across the street, across the state, across the country? I am for the most part a nervous wreck. It is so heartbreaking when he is sad, is he sad because he's bored, because I can't give him what he wants, or because he has autism?
Tonight as he sleeps quietly I wonder if he's dreaming. What does a child with autism dream about? Can he talk in his dreams like he can talk in mine? I hope someday he can tell me.
Until tomorrow.....
We woke up this morning with the television screen scrolling *** schools cancelled... Mental break cancelled... unrest begins. What do you do on a day with 7 more inches of snow and the temperature well below freezing again? Its always such a desperate time for me. Why is it that the school day passes so quickly when the boys are in school, but it feels like a minute is an hour on a snow day?
Max was on his third bath before 10am. He did not appear to be unhappy thankfully. The hard thing is finding anything that he is interested in. Today he doesn't want to watch PBS, or movies. He doesn't want to interact with me, he just wants to sit in the bathtub or spin in his chair in the tv room. One of Max's respite workers came over today and brought pizza... the kind he likes but he wasn't interested.
We took 4 rides around town today, slippery roads, covered in snow, slush and ice, but Max was happy. Each time we passed the highway to Grandma's house he'd look at me with pleading eyes... I know what that look means, it means, "Take me to Grandmas"
I would happily have done so if the storm hadn't of made the roads such a mess, not to mention the impending 30 mile per hour winds and white out conditions that the weather men kept talking about.
We went to Walmart and bought play-doh, a less than adequate alternative when he wants to go to Grandmas and I can't.. but he is still content. He is calmer at her house. Less comotion, no dogs!! Not to mention he adores her. Grandma is the only person that can make him happy when I can't. With my tail between my legs I have to say that he would choose her over me anyday, whenever he has the choice he chooses Grandma. Who wouldn't choose their Grandma right?
I wish I could get him to build a snowman, or go sledding, but he doesn't like the cold snow on his hands even through gloves. Going down a hill on a sled would be terrifying for him. I would love to do those things with him, give him those memories to take with him through his life. At least he likes Frosty the Snowman the movie.
By 6pm today Max was so restless, pacing in the kitchen, slamming the bathroom door, slamming the front door. He was carrying around his blanket and pillow (that means take me to Grandmas house). I told him we couldn't go to Grandmas house because of the weather. Max instantly became very upset, slapping himself on the top of his head, stomping his feet, screaming. The screaming startles me so badly, my whole body jumps, my heart starts to beat faster, my hands start to shake. I am suddenly in panic mode, can't think straight, can't talk right, can't focus. I realized that I was pacing when he was screaming. I pace alot, back and forth, back and forth, I've probably walked a million miles in my kitchen. I wonder if I actually walked somewhere instead of pacing... where I'd end up.... down the road, across the street, across the state, across the country? I am for the most part a nervous wreck. It is so heartbreaking when he is sad, is he sad because he's bored, because I can't give him what he wants, or because he has autism?
Tonight as he sleeps quietly I wonder if he's dreaming. What does a child with autism dream about? Can he talk in his dreams like he can talk in mine? I hope someday he can tell me.
Until tomorrow.....
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