I see all around town how excited people are about the holidays. I wish I could feel their joy. They happily hunt for presents, picking out wrapping paper, ribbons and bows. I imagine them running home with all their goodies, lighting the fireplace, decorating their tree as the aroma of cookies and cocoa fill the air. All the while laughing and singing Christmas songs, and somewhere in their Christmas prepping someone will end up with holiday bows on top of their head. They will take the perfect silly picture that will end up being the family Christmas card they send to everyone this year.
I kind of envy that scenario, actually I envy it a lot. I will again be preparing for the shut down of WalMart, McDonald's and every other place we ritualistically visit daily. I will be buying anything and everything I can, hoping Max will stay melt down free. Praying to God the roads will stay clear, and not be covered in ice and snow as I trek back and forth from the I 80 truck stop.
Today Katie and I were talking about how oblivious some people can be. For example, when they joyfully say, "Only 9 more days of school, aren't you looking forward to the break?" This is our reaction, "NO!" I don't know about any of you out there reading this, but breaks from school are more exhausting mentally and physically than just about anything. For those days you have no break at all, you panic more, your kids meltdown more, you worry more and the stress level that the majority of the days are filled with, is not safe for any human being. I spend those days holding my breath most of the time as I have mentioned in earlier posts. Katie waits for that look in Asher's eyes, that tells her he's going to explode, and not even for a moment can she turn her back, because the boiling point can happen at any minute, without any warning.
So breaks from school are not a good thing.... and the one coming up, is 18 days long. 18 days.....
18 days...... 18 days........
18 days of non stop, all day and all night, and keeping your fingers crossed that the teapot doesn't blow, trying to remember to breathe before you get light headed, trying to hold it together even when your child is falling apart over and over.
Then during all of those days you have to prepare for Christmas, knowing how oblivious most of your family is to you and your child. Its like being inserted in that scenario I mentioned earlier, but you don't get to enjoy the hot cocoa, because like Katie, she is holding Asher's arms the entire time so he doesn't take a swing at someone, but no one around you notices. And Max and I? well, we'll be traveling to the truck stop amidst the celebrations.
Its sad when you are in the middle of the party but you can't really enjoy it. Its sad when everyone around you gets to be normal, and no matter how much you try, you just can't fit in. Everyone understands the phrase 'I'm on the outside looking in" and can sympathize with how that feels, its even harder to be, "On the inside, looking in"
Until tomorrow.........
Wednesday, December 11, 2013
Tuesday, December 10, 2013
Day # 39
Today Max turned 15. My blue eyed little angel... not so little, he towers over me by about 5 inches. We are having a little party for him on Friday night. Usually he doesn't want any part of it, but somewhere inside him, I know he must know that this is a special day, his special day. I always tell him to make a wish when he blows out his candles, I don't know if he understands what I 'm telling him.... but if wishes came true on birthdays, then he would have my voice, because I wish it every year. My Mom and I always say, we'd give him our voices, we've had them long enough, now its his turn.... but every year we keep talking and he stays silent.
So Happy Happy Birthday Max I love you, MORE than words could ever say.
My dear friend "Katie" is Mom to "Asher". He and Max are classmates, as I mentioned yesterday. We spend a lot of time falling apart and putting ourselves back together as each day goes by. Thank goodness, because I think it would be really difficult to stand alone in this place sometimes. I know so many of you know exactly what I mean.
Katie's son is very aggressive, he hits himself and others, and has been on medication since he was in 2nd grade, now he's in 8th. He is absolutely beautiful and has one of those smiles that just steals your heart. I enormously admire her dedication because her journey through autism comes with a different kind of heartache. She has had to witness her sweet boy beating himself up and hitting other people and it repeatedly breaks her heart. Asher tells her that he is sorry he hits. She asks him "Why do you hit" and he doesn't know. I think one of the biggest mistakes society makes is assuming that our children can comprehend all of what they do. Much of the time that is not the case.
As Asher gets older, the doctor has to increase the dosage of medication. He is currently on two. She also has to give him a mild sedative in the event of a major aggressive meltdown that can't be controlled. Every time the doctor raises his medication her heart breaks more, and she cries more because she knows these medications are strong and will eventually shorten his lifespan.... but he can't function without them. Its devastating to know that the things that make your child's day manageable for him, can cause health problems over time.
Last week she put her Christmas Tree up and was telling me how pretty it looked and how she wanted to have some Christmas spirit in her house, she was happy and sounded festive...... a few hours later, she called to tell me Asher had ruined the tree, and broke some bulbs. She put it back together and the next day he did the same thing. Ultimately she had to move the tree to another part of the house. She said something that really resonated with me about, "continuing to pick up the pieces" We pick up the pieces everyday, whether it be broken ornaments, broken hearts, or broken dreams, and sometimes even though you've picked up all the pieces, it still looks or feels broken.
I am still trying to figure out, how to put things back together sometimes ya know?
Katie says her favorite time of day is bedtime... why? Because she watches Asher sleep, he's peaceful and she always hopes that in his dreams he is free of autism. For those brief moments she can breathe, and she can hope that his dreams make him happy, believing that makes her happy, for those hours in the night
Until tomorrow.............
So Happy Happy Birthday Max I love you, MORE than words could ever say.
My dear friend "Katie" is Mom to "Asher". He and Max are classmates, as I mentioned yesterday. We spend a lot of time falling apart and putting ourselves back together as each day goes by. Thank goodness, because I think it would be really difficult to stand alone in this place sometimes. I know so many of you know exactly what I mean.
Katie's son is very aggressive, he hits himself and others, and has been on medication since he was in 2nd grade, now he's in 8th. He is absolutely beautiful and has one of those smiles that just steals your heart. I enormously admire her dedication because her journey through autism comes with a different kind of heartache. She has had to witness her sweet boy beating himself up and hitting other people and it repeatedly breaks her heart. Asher tells her that he is sorry he hits. She asks him "Why do you hit" and he doesn't know. I think one of the biggest mistakes society makes is assuming that our children can comprehend all of what they do. Much of the time that is not the case.
As Asher gets older, the doctor has to increase the dosage of medication. He is currently on two. She also has to give him a mild sedative in the event of a major aggressive meltdown that can't be controlled. Every time the doctor raises his medication her heart breaks more, and she cries more because she knows these medications are strong and will eventually shorten his lifespan.... but he can't function without them. Its devastating to know that the things that make your child's day manageable for him, can cause health problems over time.
Last week she put her Christmas Tree up and was telling me how pretty it looked and how she wanted to have some Christmas spirit in her house, she was happy and sounded festive...... a few hours later, she called to tell me Asher had ruined the tree, and broke some bulbs. She put it back together and the next day he did the same thing. Ultimately she had to move the tree to another part of the house. She said something that really resonated with me about, "continuing to pick up the pieces" We pick up the pieces everyday, whether it be broken ornaments, broken hearts, or broken dreams, and sometimes even though you've picked up all the pieces, it still looks or feels broken.
I am still trying to figure out, how to put things back together sometimes ya know?
Katie says her favorite time of day is bedtime... why? Because she watches Asher sleep, he's peaceful and she always hopes that in his dreams he is free of autism. For those brief moments she can breathe, and she can hope that his dreams make him happy, believing that makes her happy, for those hours in the night
Until tomorrow.............
Monday, December 9, 2013
Day # 38
This has been a long long long day. I wouldn't say its been a bad day, it just seems like it lasted for 50 hours. Its 8 degrees out and I have officially lost the ability to warm up after being outside for even just a moment or two. I think I understand why people move to Florida when they retire.
It seems like not long ago I was saying how much I love the change of seasons, I think I changed my mind. I love it when the leaves change colors but once they've fallen and I have to rake them up?....... I'm ready to move on to warmer places. Frankly, I think I would be happy if I saw palm trees every day when I look out my window. I could admire a beautiful snowfall in a photograph, or be just as happy having someone send me a box of colorful leaves to my Florida address. I miss warm air!! Winter hasn't officially begun, but I am ready for it to be officially over.
Anyway.... I wanted to start telling some stories from the life of my dearest friend, her son and Max go to school together, her son also having autism. Our lives are so similar, and our boys so alike and so different..... if that makes any sense.
If I look back on this journey through autism, I remember so many things that have changed my life, and one of them is the friendships I have found. Autism brings some of us together in a way that people that don't live it, may never understand. I hope that by including their journey here as well, people may come to understand a little more. I am so blessed to have the friends that I have, and I know I would not be as strong today without them. I have said before that this can be a very isolating, and scary journey but when you don't have to go through it alone it makes it less frightening.
So today I am so thankful for my best friends, my sisters, who don't let me fall, who make me laugh when I want to cry, who have never left my side. I am eternally grateful, and thank you for sharing your journeys with your children with me.
Until tomorrow.....
'
It seems like not long ago I was saying how much I love the change of seasons, I think I changed my mind. I love it when the leaves change colors but once they've fallen and I have to rake them up?....... I'm ready to move on to warmer places. Frankly, I think I would be happy if I saw palm trees every day when I look out my window. I could admire a beautiful snowfall in a photograph, or be just as happy having someone send me a box of colorful leaves to my Florida address. I miss warm air!! Winter hasn't officially begun, but I am ready for it to be officially over.
Anyway.... I wanted to start telling some stories from the life of my dearest friend, her son and Max go to school together, her son also having autism. Our lives are so similar, and our boys so alike and so different..... if that makes any sense.
If I look back on this journey through autism, I remember so many things that have changed my life, and one of them is the friendships I have found. Autism brings some of us together in a way that people that don't live it, may never understand. I hope that by including their journey here as well, people may come to understand a little more. I am so blessed to have the friends that I have, and I know I would not be as strong today without them. I have said before that this can be a very isolating, and scary journey but when you don't have to go through it alone it makes it less frightening.
So today I am so thankful for my best friends, my sisters, who don't let me fall, who make me laugh when I want to cry, who have never left my side. I am eternally grateful, and thank you for sharing your journeys with your children with me.
Until tomorrow.....
'
Sunday, November 17, 2013
Saturday, February 9, 2013
Day #37
I don't know what to say...
Hi there! I think this is one of those days that "writers block" says it all. I am one of those people who have a lot to say and tend to never shut up... even when I should. My mind is always racing, of course there is no finish line, I seem to go in circles.
My Dad used to say, "Close your mouth, the flies are gonna get in." It was said with humor, but he really is right.
Dad? If you are reading this..... I bet you thought you'd never hear me admit you were right, especially in a place where other people could see it.
On this day, I am without any real interesting story to tell, other than our dog Rufus has learned how to play catch with himself. Our cat Bob has been sitting by the sink for hours stalking a piece of fuzz on the floor, and the boys are in their rooms watching movies as the night goes on.
Maybe the calmness of this night has let my mind slow down for once.... just a thought.
Until tomorrow....
Hi there! I think this is one of those days that "writers block" says it all. I am one of those people who have a lot to say and tend to never shut up... even when I should. My mind is always racing, of course there is no finish line, I seem to go in circles.
My Dad used to say, "Close your mouth, the flies are gonna get in." It was said with humor, but he really is right.
Dad? If you are reading this..... I bet you thought you'd never hear me admit you were right, especially in a place where other people could see it.
On this day, I am without any real interesting story to tell, other than our dog Rufus has learned how to play catch with himself. Our cat Bob has been sitting by the sink for hours stalking a piece of fuzz on the floor, and the boys are in their rooms watching movies as the night goes on.
Maybe the calmness of this night has let my mind slow down for once.... just a thought.
Until tomorrow....
Monday, December 3, 2012
Day # 36
Spinning out of control...
There are many days of this life when I feel like I have lost all control... the days when Max won't sleep, or when he's crying for reasons that I can't figure out.. or the days that one of my dogs gets out the front door and runs as far and as fast as he can, of course he doesn't come to me when I'm yelling from my yard. It's like crazy town and there is no map for the streets we travel.
Tonight it is not I that is spinning out of control, its Max... literally spinning and spinning around and around and around, and laughing hysterically. I have went to his room several times asking him to stop, he stops until I walk away....
When he was a much smaller boy he would spin like this, spinning until he would tip over. I compare it to watching a tree falling after being chopped down. His whole body would stiffen and he'd hit the ground. I would try to always catch him, but sometimes I didn't get to him in time. It didn't deter him from continuing once he could see straight again.
There must be something in the air. This morning Max woke me up and told me (on his talker) that he wanted to go to Grandmas. It took me some time to realize that this was a school day... by the time I got my wits about me, he was late for school, we missed the school bus and I had to drive him to school. I don't know where my mind was, well actually I do, I stayed up till nearly dawn watching the CSPAN footage of the Senate hearing on the rising autism rates. It was so nice to finally get some support for the position myself and so many others have regarding how our children came to be diagnosed autistic.
I have memories of my son before autism. Days when he would interact with me like a typical baby interacts. He did everything like everyone else, and almost over night it changed. That is a heartbreaking memory, and it sometimes feels like only yesterday that he would look at me and say words, like light and kitty... but its been almost 13 years.
Unless you live this life and have a child like mine who is non'verbal its hard to understand the devesation you feel down to your core. I wonder what goes through his mind, what he thinks about, what he wants to say but can't. I wonder what he'd be doing right now if Autism hadn't taken ahold of him... would he be intersted in football? Would he be a linebacker? Would he be in the band? Would he be excited about getting his drivers permit, because in my state, you can get your permit at 14 and Max will be 14 next Monday. Would he have a little girlfriend? Would he be an artist or fixing engines like his big brother? What does he want to be when he grows up? What would he be as an adult without autism? The President? A Doctor? A Pilot? An Olympian? Would he want to travel the world, or change the world? It is my hope that someday he could do anything that he wanted to do, and it is my hope that someday he could tell me what those things might be.
Until tomorrow.....
I just noticed looking back through my posts, that I don't have a day 19 hmmmm...
There are many days of this life when I feel like I have lost all control... the days when Max won't sleep, or when he's crying for reasons that I can't figure out.. or the days that one of my dogs gets out the front door and runs as far and as fast as he can, of course he doesn't come to me when I'm yelling from my yard. It's like crazy town and there is no map for the streets we travel.
Tonight it is not I that is spinning out of control, its Max... literally spinning and spinning around and around and around, and laughing hysterically. I have went to his room several times asking him to stop, he stops until I walk away....
When he was a much smaller boy he would spin like this, spinning until he would tip over. I compare it to watching a tree falling after being chopped down. His whole body would stiffen and he'd hit the ground. I would try to always catch him, but sometimes I didn't get to him in time. It didn't deter him from continuing once he could see straight again.
There must be something in the air. This morning Max woke me up and told me (on his talker) that he wanted to go to Grandmas. It took me some time to realize that this was a school day... by the time I got my wits about me, he was late for school, we missed the school bus and I had to drive him to school. I don't know where my mind was, well actually I do, I stayed up till nearly dawn watching the CSPAN footage of the Senate hearing on the rising autism rates. It was so nice to finally get some support for the position myself and so many others have regarding how our children came to be diagnosed autistic.
I have memories of my son before autism. Days when he would interact with me like a typical baby interacts. He did everything like everyone else, and almost over night it changed. That is a heartbreaking memory, and it sometimes feels like only yesterday that he would look at me and say words, like light and kitty... but its been almost 13 years.
Unless you live this life and have a child like mine who is non'verbal its hard to understand the devesation you feel down to your core. I wonder what goes through his mind, what he thinks about, what he wants to say but can't. I wonder what he'd be doing right now if Autism hadn't taken ahold of him... would he be intersted in football? Would he be a linebacker? Would he be in the band? Would he be excited about getting his drivers permit, because in my state, you can get your permit at 14 and Max will be 14 next Monday. Would he have a little girlfriend? Would he be an artist or fixing engines like his big brother? What does he want to be when he grows up? What would he be as an adult without autism? The President? A Doctor? A Pilot? An Olympian? Would he want to travel the world, or change the world? It is my hope that someday he could do anything that he wanted to do, and it is my hope that someday he could tell me what those things might be.
Until tomorrow.....
I just noticed looking back through my posts, that I don't have a day 19 hmmmm...
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