Another snow storm today in this, freezing cold, winter wonderland called Iowa. As Max and I were taking a ride this evening, and the snow was coming down... it looked like glitter falling out of the sky. It sparkled as it flitted across the passing headlights and landed on the road. Ahead of me it looked like glitter and diamonds everywhere.. beautiful. BUT... I am missing the warm air and sunny skies.
Despite Max not feeling well, he wanted to drive around town, not going anywhere, just driving, like every other night, tonight however, he didn't want to go to WalMart. I feel so bad for him, he hasn't felt good since Christmas. Thankfully he rarely gets sick, but times like this are particularly hard on him... he refuses to take cold medicine or anything else. The most I can do is rub Vic's on his chest and let him sit in the steamy bathroom to calm his coughing.
I wanted to talk about trust tonight. About a month ago, I was informed by the school district of a heartbreaking breach of trust. Someone that worked with Max had noticed when he was sitting down that his behind was showing because his pants had sagged. She thought it would be funny to take a picture of that, and send it via snap chat to other employees of the school. The recipients of that picture went and told the appropriate people. So I then receive a phone call from the director of special education, telling me what had happened. Needless to say, the person who took the photo is no longer working in the schools.
I was devastated. Max loved her, and I thought she was wonderful, and loved knowing that he was happy going to school, and loved working with her. The most tragic thing to me is that we, as parents of kids with disabilities, always have to worry about bullying from other students.... never did I imagine it would be from an adult employee who is supposed to care about my child. I think that is the most tormenting thing to me. My sweet son, and others like him, who trust people, who are innocent of malice and cruelty..... who have to rely on adults to keep them safe.... are often times even disregarded by those who we trust the most.
Max just had to go back to school one day and see that one of the people he loved the most, was gone... and I have to wonder how many days he looked for her to come back to class.... if he wondered where she was, or why she was gone. He was an unknowing victim, and so far as we can tell, knew nothing of that picture. For someone to knowingly disrespect my son like that, just sickens me. The worst kind of bully, is a bully that chooses someone who can't defend themselves, and an adult no less in charge of his well being, AND on the same week as the anti-bullying campaign at my school district.
I struggle with trusting people when it comes to my sweet Max anyway, and when I look into those big blue eyes of his, I can't fathom why anyone would think it was acceptable to make a joke of him. Its very sad, when those you trust the most are those that end up betraying you and your child.
Until tomorrow...........
Monday, December 30, 2013
Sunday, December 29, 2013
The Other side of Day #55
So this is definitely the mad house tonight.... My cat, Bob, 17, toothless and kind of cross eyed has been staring at me for some time now....just staring, with her tongue sticking out, meowing that silent meow I have no idea why, she has food and water. Rufus our dog is whining because Bella, our other dog took the last rawhide away from him, I can't take it away from her... because he stole it from her to begin with, she just took it back.
Max is obsessed with watching How the Grinch Stole Christmas, and despite having hundreds of vhs tapes he could be watching..... he wants to watch The Grinch.. The Grinch, however is the only tape that refuses to play, so he is relentlessly pushing play, taking the tape out, putting it back in, rewinding it, forwarding it and crying. I have tried 25 other tapes hoping to appease him, and miserably failing. It is 9:35 pm and we have been doing this since 5:00, over 4 and a half hours. This is one of those segments of time that I throw my hands up in the air yelling, "GOD? Are you kidding me? I hear you can make miracles...... make the Grinch tape play!!" At this very moment he is almost asleep listening to the audio, despite the picture not working.... it hasn't worked in any of the other 8 vcrs I hooked up. Yep, 8 vcrs....
Katie and I have this ongoing joke between us, we laugh about it at work quite a bit. We believe that we are Gods reality show. We think if they are watching anything up there, they are watching us try and fail. Its probably a huge hit. If it were true, we should win some kind of award for being such a great variety show all these years.
I wonder tonight if I may be a little to stressed out. This is the 9th day of Christmas vacation. Not a lot of opportunities for work with all the holidays.... so on the days when we need more income for all of the hours and days of entertaining our boys.... we literally have nothing. But.... we are working on something, and with any luck it will be a huge success and finally we will be able to climb out of the ravages of "abject poverty" as our fellow Autism sister Michelle so eloquently puts it.
A person can buy just about anything online, or at Walmart.... where is that money tree we need so badly? I'm guessing its growing beside the fountain of youth.
Until tomorrow..........
Max is obsessed with watching How the Grinch Stole Christmas, and despite having hundreds of vhs tapes he could be watching..... he wants to watch The Grinch.. The Grinch, however is the only tape that refuses to play, so he is relentlessly pushing play, taking the tape out, putting it back in, rewinding it, forwarding it and crying. I have tried 25 other tapes hoping to appease him, and miserably failing. It is 9:35 pm and we have been doing this since 5:00, over 4 and a half hours. This is one of those segments of time that I throw my hands up in the air yelling, "GOD? Are you kidding me? I hear you can make miracles...... make the Grinch tape play!!" At this very moment he is almost asleep listening to the audio, despite the picture not working.... it hasn't worked in any of the other 8 vcrs I hooked up. Yep, 8 vcrs....
Katie and I have this ongoing joke between us, we laugh about it at work quite a bit. We believe that we are Gods reality show. We think if they are watching anything up there, they are watching us try and fail. Its probably a huge hit. If it were true, we should win some kind of award for being such a great variety show all these years.
I wonder tonight if I may be a little to stressed out. This is the 9th day of Christmas vacation. Not a lot of opportunities for work with all the holidays.... so on the days when we need more income for all of the hours and days of entertaining our boys.... we literally have nothing. But.... we are working on something, and with any luck it will be a huge success and finally we will be able to climb out of the ravages of "abject poverty" as our fellow Autism sister Michelle so eloquently puts it.
A person can buy just about anything online, or at Walmart.... where is that money tree we need so badly? I'm guessing its growing beside the fountain of youth.
Until tomorrow..........
Saturday, December 28, 2013
Day #55
I want to Thank you all for reading my blog, it means a lot to me that you do!! People in 10 countries are reading, and I am so thrilled! Do all of you share autism with me? I'd love to know your stories.
Since it is after 1am "technically" it is Day #55 even though I haven't gone to bed yet. I'm sitting up tonight thinking about what life will be like for Max when he's an adult. Katie and I want our boys to live together when they grow up. It is a really touchy subject for a lot of us, but for me.... I know it is a subject that can't be avoided.
I used to shutter at the thought of Max not living with me when he's an adult, but there are so many reasons why keeping him home would be unfair to him. I will grow old... we all will, and being able to give him what he needs when I am elderly will not be possible. What happens when I can no longer drive him around? If I use a walker or develop Alzheimer's? What if I am in poor health and need caregivers myself? I often feel guilty for thinking about it, but one thing that always crosses my mind is my death. If I keep him with me until I die.... what would happen if I died in my sleep? He wouldn't understand why I wasn't waking up. He would possibly not know how to call for help... How much time would pass before someone came to see if everything was ok? Would he be alone for hours, days? That makes my heart ache...
Suddenly his life would be turned inside out, and new and strange people would be putting him somewhere new, somewhere he would not know anyone. He wouldn't have a choice, and that would be my fault, because I didn't consider his life without me in it... ya know?
I want to be able to decide with him what his home will look like and who will be living with him, as well as who is caring for him when I can no longer do it. I know a lot of people who won't even entertain the thought of their child not being with them always, but avoiding reality isn't going to change what it is.
I think the biggest issue is, when we think of the future for our children, we look at our sweet sons and daughters faces at this moment in time, through our eyes... at this moment in time... not what it will be like in a decade or two. We all struggle with our children growing up... we all struggle with growing old, but its going to happen. I will somehow come to terms with it... over time, but several years from now when I do have to make those hard decisions for him, I at least will have the peace of mind that I made sure he would be ok... when I am gone.
Until tomorrow..........
Since it is after 1am "technically" it is Day #55 even though I haven't gone to bed yet. I'm sitting up tonight thinking about what life will be like for Max when he's an adult. Katie and I want our boys to live together when they grow up. It is a really touchy subject for a lot of us, but for me.... I know it is a subject that can't be avoided.
I used to shutter at the thought of Max not living with me when he's an adult, but there are so many reasons why keeping him home would be unfair to him. I will grow old... we all will, and being able to give him what he needs when I am elderly will not be possible. What happens when I can no longer drive him around? If I use a walker or develop Alzheimer's? What if I am in poor health and need caregivers myself? I often feel guilty for thinking about it, but one thing that always crosses my mind is my death. If I keep him with me until I die.... what would happen if I died in my sleep? He wouldn't understand why I wasn't waking up. He would possibly not know how to call for help... How much time would pass before someone came to see if everything was ok? Would he be alone for hours, days? That makes my heart ache...
Suddenly his life would be turned inside out, and new and strange people would be putting him somewhere new, somewhere he would not know anyone. He wouldn't have a choice, and that would be my fault, because I didn't consider his life without me in it... ya know?
I want to be able to decide with him what his home will look like and who will be living with him, as well as who is caring for him when I can no longer do it. I know a lot of people who won't even entertain the thought of their child not being with them always, but avoiding reality isn't going to change what it is.
I think the biggest issue is, when we think of the future for our children, we look at our sweet sons and daughters faces at this moment in time, through our eyes... at this moment in time... not what it will be like in a decade or two. We all struggle with our children growing up... we all struggle with growing old, but its going to happen. I will somehow come to terms with it... over time, but several years from now when I do have to make those hard decisions for him, I at least will have the peace of mind that I made sure he would be ok... when I am gone.
Until tomorrow..........
Day #54
I wonder if I am the only one who spends a lot of time bored out of my mind????!!! Max is watching movies, he hasn't felt good for a few days, finally tonight he is seeming more like himself. He has a lot of verbal stims. He yells, "Ahhhhhhh yaaaaaaa!" a lot when he is happy, and a lot of "OOOOOO's" Jay is addicted to a game on the internet called "Forsaken World" He plays it a lot, he is an assassin that kills dragons and monsters. Fun fun fun...
I have to talk about the insane dreams I have... I always try to rationalize them, but most of the time they make no sense. Last night... in my dream, I drove 6 hours from Iowa and miraculously made it to North Carolina, driving a 1980 red LTD car. 6 hours? So I pulled into a McDonald's.. of course there has to be a McDonald's right? An old friend of mine from decades ago named Jack, was ending his shift... that makes no sense because he's a musician. He came over to my car, my boys in the back seat and asked us to come over to his place and have pizza. We followed him to the end of the parking lot where he lived in a broken down trailer. We sat in his living room, and within minutes he was a haggard skinny old man. He ordered pizza and told me we could eat it on our way home, and shortly thereafter we left.
It always cracks me up how dreams can make no sense. I have always had strange dreams... when I was little I had a recurring dream where Uncle Sam would chase me through the jagged rocks along the Mississippi river.... I was so scared of him.
Hmmmm, so even in my dreams, things are strange... I guess its not always boring though. I wonder where my mind will take me tonight? I hope if it takes me back to Jacks house, he's playing bass, and not living in the McDonald's parking lot, and if he orders pizza again?.... I hope we get to sit at his kitchen table and catch up!
I have to talk about the insane dreams I have... I always try to rationalize them, but most of the time they make no sense. Last night... in my dream, I drove 6 hours from Iowa and miraculously made it to North Carolina, driving a 1980 red LTD car. 6 hours? So I pulled into a McDonald's.. of course there has to be a McDonald's right? An old friend of mine from decades ago named Jack, was ending his shift... that makes no sense because he's a musician. He came over to my car, my boys in the back seat and asked us to come over to his place and have pizza. We followed him to the end of the parking lot where he lived in a broken down trailer. We sat in his living room, and within minutes he was a haggard skinny old man. He ordered pizza and told me we could eat it on our way home, and shortly thereafter we left.
It always cracks me up how dreams can make no sense. I have always had strange dreams... when I was little I had a recurring dream where Uncle Sam would chase me through the jagged rocks along the Mississippi river.... I was so scared of him.
Hmmmm, so even in my dreams, things are strange... I guess its not always boring though. I wonder where my mind will take me tonight? I hope if it takes me back to Jacks house, he's playing bass, and not living in the McDonald's parking lot, and if he orders pizza again?.... I hope we get to sit at his kitchen table and catch up!
Friday, December 27, 2013
Day #53
I'm not sure how many of you know how much I LOVE Phantom of the Opera..... I love it, and the movie starring Gerard Butler and Emmy Rossum is my favorite version of it. I have watched it so many times.... I have it memorized. Most of us have a song we could listen to over and over, but me.... I have movies I watch over and over, several actually, all love stories, but Phantom is by far, one I have my own love affair with.
I sometimes play the soundtrack in my truck as I'm going nowhere and anywhere .That music just soaks into my soul, I wish everyone could see what I see in that production and feel what I feel when I hear it, I think it is just beautiful. If you haven't seen it.... you should make it a point to watch it, or listen to it.
I have said many times what a hopeless romantic I am, and something about the Phantom and Christine and their love for each other is so breathtaking. Maybe because it wasn't ultimately about what they looked like to each other, it was about how their music spoke to each others hearts.
Phantom sang toward the end "Masquerade, paper faces on parade, masquerade, hide your face so the world will never find you" That short sweet part of that production always makes me cry, no matter how many times I hear it or see it, because all he really wants is people to accept him. He makes beautiful music, but everyone still thinks he's a monster, because of his face. Oh anyway...
Maybe somehow that applies to life in general... we all want people to see the beauty within and most of the time they don't.
Until tomorrow..........
I sometimes play the soundtrack in my truck as I'm going nowhere and anywhere .That music just soaks into my soul, I wish everyone could see what I see in that production and feel what I feel when I hear it, I think it is just beautiful. If you haven't seen it.... you should make it a point to watch it, or listen to it.
I have said many times what a hopeless romantic I am, and something about the Phantom and Christine and their love for each other is so breathtaking. Maybe because it wasn't ultimately about what they looked like to each other, it was about how their music spoke to each others hearts.
Phantom sang toward the end "Masquerade, paper faces on parade, masquerade, hide your face so the world will never find you" That short sweet part of that production always makes me cry, no matter how many times I hear it or see it, because all he really wants is people to accept him. He makes beautiful music, but everyone still thinks he's a monster, because of his face. Oh anyway...
Maybe somehow that applies to life in general... we all want people to see the beauty within and most of the time they don't.
Until tomorrow..........
Day #52
Merry Christmas to all, and to all a good night!!!
I made it through this day!!! Two trips to the truck stop, and Max ate nothing, he has a cold and he isn't feeling well.
Grandma made me laugh all day with her dancing video... I watched it over and over and laughed so hard, I couldn't breathe. That was so nice. Laughter is definitely a great pill for the heart.
Katie and Asher and the rest of their family had a nice peaceful day as well. That is so nice, because often days like that are few and far between for so many of us.
When I woke up this morning Max had already taken all the videos I wrapped up for him, into his room and unwrapped them, so I didn't get a single picture until Grandma and Aunt Tiki arrived with presents. He doesn't really wake me up these days, which we decided, isn't a good thing. I think I will need to revisit the consideration for alarms on my doors... just in case he decided to go outside without waking me up. That is such a frightening thought, and many of you who have read all of my posts understand why.
I'd like to think he wouldn't wander off, but one can never be certain, and even though he is 5'10, he is still my little Peanut, that can't tell anyone where he belongs if he gets lost. Thoughts of him getting lost make me sick to my stomach, so I do think alarms will probably be a part of our life in the days ahead when the weather gets nicer.
I was thinking tonight as I was wandering through the truck stop, and watching all the people come and go.. where they were going.... where they were coming from.... and do they have an autistic child waiting outside with someone in their car too? Am I the only one that drives an hour and a half round trip twice in one day to buy French fries? It went through my mind over and over..... Am I the only one? What do other Mom's like Katie, Michelle and I, have to do, to get through holidays when for that 24 hour period.... everything in our worlds are turned upside down? I wonder what goes through their minds, what happens with their children.... and how many of them hold their breath like I do.
Now Max is sleeping, we survived another Christmas, and I have eaten way to much chocolate covered butter toffee. Jay enjoyed his gifts and tomorrow will be back to our normal......
Until tomorrow.........
I made it through this day!!! Two trips to the truck stop, and Max ate nothing, he has a cold and he isn't feeling well.
Grandma made me laugh all day with her dancing video... I watched it over and over and laughed so hard, I couldn't breathe. That was so nice. Laughter is definitely a great pill for the heart.
Katie and Asher and the rest of their family had a nice peaceful day as well. That is so nice, because often days like that are few and far between for so many of us.
When I woke up this morning Max had already taken all the videos I wrapped up for him, into his room and unwrapped them, so I didn't get a single picture until Grandma and Aunt Tiki arrived with presents. He doesn't really wake me up these days, which we decided, isn't a good thing. I think I will need to revisit the consideration for alarms on my doors... just in case he decided to go outside without waking me up. That is such a frightening thought, and many of you who have read all of my posts understand why.
I'd like to think he wouldn't wander off, but one can never be certain, and even though he is 5'10, he is still my little Peanut, that can't tell anyone where he belongs if he gets lost. Thoughts of him getting lost make me sick to my stomach, so I do think alarms will probably be a part of our life in the days ahead when the weather gets nicer.
I was thinking tonight as I was wandering through the truck stop, and watching all the people come and go.. where they were going.... where they were coming from.... and do they have an autistic child waiting outside with someone in their car too? Am I the only one that drives an hour and a half round trip twice in one day to buy French fries? It went through my mind over and over..... Am I the only one? What do other Mom's like Katie, Michelle and I, have to do, to get through holidays when for that 24 hour period.... everything in our worlds are turned upside down? I wonder what goes through their minds, what happens with their children.... and how many of them hold their breath like I do.
Now Max is sleeping, we survived another Christmas, and I have eaten way to much chocolate covered butter toffee. Jay enjoyed his gifts and tomorrow will be back to our normal......
Until tomorrow.........
Day #51
I have to write 4 posts tonight, that have sat in a notebook as the last few days have passed.... Christmas madness overcomes me. So here we go....
So its Christmas Eve, tonight at 11pm, I finally got my little tree decorated, I could never get it to stand up, so it kind of leans against the wall. How sad.... Jay says its the Charlie Brown Christmas tree, because hanging one ornament literally knocked it over... time and time again. It was a pretty sad sight BUT... at least I decorated it before midnight. Better late than never right?
I tried so hard to have the holiday spirit.... I tried so hard to find it, but it just never surfaced. I wish someone could have wrapped it up and put it under the tree for me, but its not there. In fact there is nothing under my tree. I think that may be part of the problem. My x husband didn't bother to send the boys Christmas money... which is usually the way I get to fill the tree every year. So I looked at this lonely little empty tree and was devastated.
I had several vhs tapes for Max, that I wrapped up so he will see something in the morning, its about the only thing he likes anyway, and Grandma and Aunt Tiki will be here tomorrow with lots of goodies for the boys. For Jay, I had a couple gift cards. Oh my god, I can't remember a Christmas like this, but its been a rough couple of months. I kept hoping that their Dad would come through, but he didn't and that is just tragic.... The most tragic thing really, is that he doesn't think cruel that really is.
I made a decision about it all though... I am done trying. Done trying to make him see the light, done trying to make him appreciate what he's disregarding. It doesn't work. I know Jays feeling are hurt, and Max?... I don't know for sure, but if the way he adores people is any indicator to how he may be feeling inside, I can only assume that his precious heart is hurt too.
So we are going to move on from the constant disappointment and look forward to better days, and merrier Christmases.
Until tomorrow........
So its Christmas Eve, tonight at 11pm, I finally got my little tree decorated, I could never get it to stand up, so it kind of leans against the wall. How sad.... Jay says its the Charlie Brown Christmas tree, because hanging one ornament literally knocked it over... time and time again. It was a pretty sad sight BUT... at least I decorated it before midnight. Better late than never right?
I tried so hard to have the holiday spirit.... I tried so hard to find it, but it just never surfaced. I wish someone could have wrapped it up and put it under the tree for me, but its not there. In fact there is nothing under my tree. I think that may be part of the problem. My x husband didn't bother to send the boys Christmas money... which is usually the way I get to fill the tree every year. So I looked at this lonely little empty tree and was devastated.
I had several vhs tapes for Max, that I wrapped up so he will see something in the morning, its about the only thing he likes anyway, and Grandma and Aunt Tiki will be here tomorrow with lots of goodies for the boys. For Jay, I had a couple gift cards. Oh my god, I can't remember a Christmas like this, but its been a rough couple of months. I kept hoping that their Dad would come through, but he didn't and that is just tragic.... The most tragic thing really, is that he doesn't think cruel that really is.
I made a decision about it all though... I am done trying. Done trying to make him see the light, done trying to make him appreciate what he's disregarding. It doesn't work. I know Jays feeling are hurt, and Max?... I don't know for sure, but if the way he adores people is any indicator to how he may be feeling inside, I can only assume that his precious heart is hurt too.
So we are going to move on from the constant disappointment and look forward to better days, and merrier Christmases.
Until tomorrow........
Monday, December 23, 2013
Day #50
I forget things so easily.... I'm not sure if that is specific to being 43, or if its because of stress. I know I'm not the only one though. I have this great idea.. or something I want to say, or tell someone.. and it will fly right outta my ear, never to be thought, said, or told again. I wonder how many life changing, amazing, things crossed my mind... that I forgot. Guess I'll never know, because I can't remember!!
I have facebook friends, that I should remember.. I remember their names, but that's all, not all of them, but some. I wonder if I'm the only one who puts an x on her hand.... to remind me of something important... then I forget what the x is for. How sad is that.
I suppose its part of getting older, and I really don't like it at all. I would really love to find that fountain of youth so I could go soak myself... long enough to be 23 again. Long enough to have that youthful glow... I think they call it, "looking dewy" Yes looking like that would make me very happy.
So today, two days before Christmas, and I have gotten my tree out in the living room, it won't stand up and I haven't decorated, haven't wrapped a single present, haven't done any of it. I lost my Christmas Spirit somewhere... and this year I am really struggling to find it. I love the lights on the houses all over town, and some beautiful trees that I see in picture windows, but it doesn't leave me feeling any more festive. I think to myself... "Awww that's pretty" then I drive on.
I think Jay was excited for Santa to come for a few years, Max never was... I am not sure if he ever knew who Santa Claus is. I would love to know. I would love to know what he'd ask for if he could talk, what he'd of asked for all these years that have passed us by. That is a beautiful, but heartbreaking thought.. and its one of those thoughts that despite my failing memory... has never been forgotten. Of course my Christmas wish is always to hear his voice... and have a conversation with him... I would give anything to hear him talking to me. His words would be like music to my ears... and I would never want to stop listening. I can't even write those words without tears streaming down my face. I think in this entire journey of life and autism, that is the one thing that my heart just breaks for every single day... If only we could figure out how to find his words.
I remember a line from a poem I wrote many years ago..... "If I could give you back your voice... would you take it, and go play?"
Until tomorrow
I have facebook friends, that I should remember.. I remember their names, but that's all, not all of them, but some. I wonder if I'm the only one who puts an x on her hand.... to remind me of something important... then I forget what the x is for. How sad is that.
I suppose its part of getting older, and I really don't like it at all. I would really love to find that fountain of youth so I could go soak myself... long enough to be 23 again. Long enough to have that youthful glow... I think they call it, "looking dewy" Yes looking like that would make me very happy.
So today, two days before Christmas, and I have gotten my tree out in the living room, it won't stand up and I haven't decorated, haven't wrapped a single present, haven't done any of it. I lost my Christmas Spirit somewhere... and this year I am really struggling to find it. I love the lights on the houses all over town, and some beautiful trees that I see in picture windows, but it doesn't leave me feeling any more festive. I think to myself... "Awww that's pretty" then I drive on.
I think Jay was excited for Santa to come for a few years, Max never was... I am not sure if he ever knew who Santa Claus is. I would love to know. I would love to know what he'd ask for if he could talk, what he'd of asked for all these years that have passed us by. That is a beautiful, but heartbreaking thought.. and its one of those thoughts that despite my failing memory... has never been forgotten. Of course my Christmas wish is always to hear his voice... and have a conversation with him... I would give anything to hear him talking to me. His words would be like music to my ears... and I would never want to stop listening. I can't even write those words without tears streaming down my face. I think in this entire journey of life and autism, that is the one thing that my heart just breaks for every single day... If only we could figure out how to find his words.
I remember a line from a poem I wrote many years ago..... "If I could give you back your voice... would you take it, and go play?"
Until tomorrow
Saturday, December 21, 2013
Day #49
Its snowing outside, and its time to take the dogs out.... I can't do it... not because I'm scared to fall down, but because I just saw something about The Walking Dead on the Internet. I had this vision of Zombies coming out of the woods beside my driveway. You know that feeling after you watch a scary movie and you're scared to go down the hall to the bathroom... or scared to turn on the kitchen light for fear Michael Meyers might really be standing there? Anyhow, sometimes those woods by my house are really creepy and when my dogs stand there and bark at the woods... kinda freaks me out. Jay is taking them out... what a sweet kid! He seems to think a zombie apocalypse would be fun... hmmmm.
Tonight I was talking to Katie, and my friend in Oregon, also Mom to a 16 year old autistic boy.
Near and far away, our stories are so much alike. Currently we all are standing in the midst of financial ruin. Not a fun place to be for anyone, even more so at this time of year, but a place we are at none the less. I struggled with always talking about this because its embarrassing.... I never pictured being where I am, I never pictured having a 0 balance in my checkbook, but if I look back over the last decade... its always been a 0, and I am not alone. Its hard to change that when you live the lives that we live. For a lot of us, things can't be "normal" There is no 9-5, there's... work when schools in session, no nights, no weekends, not during holiday breaks, there is no overtime... no pension, no 401k, nothing.
Its a scary thought. What will happen when we are all 65? Will we still be doing hard physical labor, still living hand to mouth? Still looking at the zeros in our bank accounts? We are smart people.... what is the one thing that is going to help us all? That is the 64,000 dollar question. Now I just need to figure out the 64,000 dollar answer.
I know so many of us feel that anxiety, worrying about what's going to happen next, and hoping that whatever it is... we can handle it, just like we've handled everything else that's been put in our path. Some things like stepping stones, some like boulders... some like mountains... I'm not a good climber, I suppose this is another one of those situations where I just keep falling down..... but I manage to get back up. But still, we need to find the answer that is going to make things better for us, and for all the other Mom's just like us no matter where they are.
If only pennies were 100 dollar bills! How fabulous would that be?
Until tomorrow..........
Tonight I was talking to Katie, and my friend in Oregon, also Mom to a 16 year old autistic boy.
Near and far away, our stories are so much alike. Currently we all are standing in the midst of financial ruin. Not a fun place to be for anyone, even more so at this time of year, but a place we are at none the less. I struggled with always talking about this because its embarrassing.... I never pictured being where I am, I never pictured having a 0 balance in my checkbook, but if I look back over the last decade... its always been a 0, and I am not alone. Its hard to change that when you live the lives that we live. For a lot of us, things can't be "normal" There is no 9-5, there's... work when schools in session, no nights, no weekends, not during holiday breaks, there is no overtime... no pension, no 401k, nothing.
Its a scary thought. What will happen when we are all 65? Will we still be doing hard physical labor, still living hand to mouth? Still looking at the zeros in our bank accounts? We are smart people.... what is the one thing that is going to help us all? That is the 64,000 dollar question. Now I just need to figure out the 64,000 dollar answer.
I know so many of us feel that anxiety, worrying about what's going to happen next, and hoping that whatever it is... we can handle it, just like we've handled everything else that's been put in our path. Some things like stepping stones, some like boulders... some like mountains... I'm not a good climber, I suppose this is another one of those situations where I just keep falling down..... but I manage to get back up. But still, we need to find the answer that is going to make things better for us, and for all the other Mom's just like us no matter where they are.
If only pennies were 100 dollar bills! How fabulous would that be?
Until tomorrow..........
Friday, December 20, 2013
Day #48
Today was the last day of school and it was an early release...... freezing rain... that turned my driveway into a skate rink that goes down hill. Jay had to be creative as he put down the ice melt, he slid down the driveway yelling, "Mom, I'm going down!" I couldn't help him as I would have slid right into him if I'd of gone down after him. Eventually he caught himself, thinking it was funny... me on the other hand have developed a new anxiety.... ICE!
Several months ago I injured my knee and it took months for it to heal, I am petrified I will fall again. It is kind of funny to watch people fall down.... as long as they don't get hurt, and as I said before, I am good at it. But... I can't re-injure my knee again, I was so helpless, walking anywhere was agonizing. Many wonderful people in town helped me at different stores as I couldn't walk very far, and it is so devastating to feel that pain, and know how much it affects every facet of your life. Thank goodness I recovered
Today Katie and I had our own Christmas party at work, it was fun. We ate things we shouldn't eat... and laughed about a man that flirted with me! I am a social misfit, and forgot how to respond really. He asked me if I used to work at a certain place, I said No, then he nervously apologized to me as he scurried away. We wondered what would have happened if I'd of said yes to his question. Would he still have walked away? I have been single for a long long long long time... my life is my boys and my imaginary romance with Rufus Sewell. Really I am not sure if I would know what to do if I had a real romance. I would probably be disappointed as I have had years to create the perfect fairytale in my mind, and honestly it would be hard to not have exactly that for real. I think some people would call me delusional... I prefer to call myself hopeful. I guess they could be the same thing, it depends how you look at it right? So maybe I am hopelessly delusional?
Anyway, so it begins.... Christmas break, Max's vcr broke at 8pm and I spent two hours trying to get it to work as he slapped his fingers into the palms of his hands, and slapped his feet together. I must have jinxed myself when I mentioned that Day #47. All is well now because I found one I had bought the other day that works, so he giggled for an hour watching Tarzan, till he finally fell asleep..
I still haven't put up my Christmas tree. I need to do that tomorrow, I'm running out of time!!
Until tomorrow..........
Several months ago I injured my knee and it took months for it to heal, I am petrified I will fall again. It is kind of funny to watch people fall down.... as long as they don't get hurt, and as I said before, I am good at it. But... I can't re-injure my knee again, I was so helpless, walking anywhere was agonizing. Many wonderful people in town helped me at different stores as I couldn't walk very far, and it is so devastating to feel that pain, and know how much it affects every facet of your life. Thank goodness I recovered
Today Katie and I had our own Christmas party at work, it was fun. We ate things we shouldn't eat... and laughed about a man that flirted with me! I am a social misfit, and forgot how to respond really. He asked me if I used to work at a certain place, I said No, then he nervously apologized to me as he scurried away. We wondered what would have happened if I'd of said yes to his question. Would he still have walked away? I have been single for a long long long long time... my life is my boys and my imaginary romance with Rufus Sewell. Really I am not sure if I would know what to do if I had a real romance. I would probably be disappointed as I have had years to create the perfect fairytale in my mind, and honestly it would be hard to not have exactly that for real. I think some people would call me delusional... I prefer to call myself hopeful. I guess they could be the same thing, it depends how you look at it right? So maybe I am hopelessly delusional?
Anyway, so it begins.... Christmas break, Max's vcr broke at 8pm and I spent two hours trying to get it to work as he slapped his fingers into the palms of his hands, and slapped his feet together. I must have jinxed myself when I mentioned that Day #47. All is well now because I found one I had bought the other day that works, so he giggled for an hour watching Tarzan, till he finally fell asleep..
I still haven't put up my Christmas tree. I need to do that tomorrow, I'm running out of time!!
Until tomorrow..........
Thursday, December 19, 2013
Day #47
Tomorrow is the last day of school.... then comes the 18 days of anxiety. I have started practicing breathing so I can be prepared when Max's vcr stops working. I think I have bought or been given at least 35 vcrs in the last year. He is so happy when he gets to watch his movies so its worth it. Its kind of funny to watch him as he's picking out his movies, and he picks out such a strange array. Tonight he bought Silence of the Lambs, Chitty Chitty Bang, Bang, Speed and Mulan.
He must like the number 4. He gets 4 movies, 4 cans of playdoh, he eats 4 pieces of taffy, and when he is at McDonalds eating inside the restaurant.... he takes 2 long French fries, then takes a third one and breaks it in half and puts the two halves in between the two long ones. He eats all of his food... and eats those four last. 4 is significant to him and I don't quite know why.
Its fascinating to watch him as he picks out movies, he looks at the cover, then the sides, then the back.... I always wondered why until I watched Asher do the same thing. Katie told me that he memorizes them.... he has photographic memory. It is absolutely fascinating... and I wonder if Max is doing the same thing, but since he is non verbal, I can't be sure. I wish there was a way I could figure it out.
Oh!!! I didn't get to post last night... long day as I worried all night the night before about the doctors appointment. There is nothing wrong medically and both of the doctors believe Max's wetting is behavioral, just like I did! Now the problem to be solved is how to break him of this behavior. Nothing is ever easy when it comes to most of his stims or behaviors, but I have 18 days to try to stop it before school starts up again, I hope I can figure it out. It will be my mission over the next two and a half weeks. Wish me luck.
Until tomorrow.......
He must like the number 4. He gets 4 movies, 4 cans of playdoh, he eats 4 pieces of taffy, and when he is at McDonalds eating inside the restaurant.... he takes 2 long French fries, then takes a third one and breaks it in half and puts the two halves in between the two long ones. He eats all of his food... and eats those four last. 4 is significant to him and I don't quite know why.
Its fascinating to watch him as he picks out movies, he looks at the cover, then the sides, then the back.... I always wondered why until I watched Asher do the same thing. Katie told me that he memorizes them.... he has photographic memory. It is absolutely fascinating... and I wonder if Max is doing the same thing, but since he is non verbal, I can't be sure. I wish there was a way I could figure it out.
Oh!!! I didn't get to post last night... long day as I worried all night the night before about the doctors appointment. There is nothing wrong medically and both of the doctors believe Max's wetting is behavioral, just like I did! Now the problem to be solved is how to break him of this behavior. Nothing is ever easy when it comes to most of his stims or behaviors, but I have 18 days to try to stop it before school starts up again, I hope I can figure it out. It will be my mission over the next two and a half weeks. Wish me luck.
Until tomorrow.......
Tuesday, December 17, 2013
Day #46
So I will wake up in less than 7 hours, preparing to take Max to this Doctors appointment in Iowa City, knowing full well how traumatizing its going to be for him... just like every doctors appointment. Why? Let me tell you a couple of examples and you will without a doubt know this will be no cake walk... you may even question on one occasion why I didn't get an attorney.
Rewind to 12 years ago, when the doctors first started wrapping him in the papoose. If you don't know what that is, to me its like a full body straight jacket so he can't move his arms or legs. Its terrifying to him and heartbreaking for me. As he got older and bigger that was not an option so several people on whatever medical staff would have to collectively hold him down, while I kissed his cheeks, and reassured him he would be ok, as he screamed in fear. I would be so devastated that I had to subject him to those kinds of situations.... I am Mom, I am supposed to make him feel safe, instead I have to look into his big blue, scared to death eyes and let this happen to him over and over.
Then there are the appointments where people hold him down and strap his head to the table and pry his mouth open with metal devices to look at his teeth, I again stare into those eyes that steal my heart everyday and know he wants me to save him and I can't. He must wonder why I am letting these frightening things happen to him and why am I a part of it. I can barely take the guilt. But I could never leave his side, I want him to always know that I will be there to look into his eyes and whisper, "Its ok Maxxy, they just want to help you... " Even though, to him it doesn't feel that way.
Then of course, the final chapter in my trusting physicians. The school assumed he had an ear infection, I knew other wise but to appease them I took him to the doctor, this jackass doctor who could not get a look in his ears, ultimately jumped on his back, while Max screamed, the doctor had his forearm pinning Max's neck to the table as he screamed and screamed. I told the doctor to get off of him... WE ARE DONE HERE! I never took him back there, I filed a complaint with the hospital.... and guess what? Nothing happened, he is still there probably mistreating other patients with disabilities. It makes me sick to think about that day.
I am sickened by the fact that instead of doing something to lessen the fear of children like mine, a lot of times its made worse by doctors that have NO bedside manner. My son is a human being and should NEVER be treated like anything less, and he has been, so many times. I can't remember what that code of conduct a doctor goes by is called, but part of it says "First do no harm" and my sweet sweet boy has suffered at the hands of many who don't abide by that. People like this particular doctor should not be practicing medicine. If you want to know his name because you are in my area and are looking for a doctor, email me. Don't make the same mistake I did, our children deserve so much better. They deserve the same care, concern and respect as anyone, in fact I think they deserve more.
Until tomorrow
Rewind to 12 years ago, when the doctors first started wrapping him in the papoose. If you don't know what that is, to me its like a full body straight jacket so he can't move his arms or legs. Its terrifying to him and heartbreaking for me. As he got older and bigger that was not an option so several people on whatever medical staff would have to collectively hold him down, while I kissed his cheeks, and reassured him he would be ok, as he screamed in fear. I would be so devastated that I had to subject him to those kinds of situations.... I am Mom, I am supposed to make him feel safe, instead I have to look into his big blue, scared to death eyes and let this happen to him over and over.
Then there are the appointments where people hold him down and strap his head to the table and pry his mouth open with metal devices to look at his teeth, I again stare into those eyes that steal my heart everyday and know he wants me to save him and I can't. He must wonder why I am letting these frightening things happen to him and why am I a part of it. I can barely take the guilt. But I could never leave his side, I want him to always know that I will be there to look into his eyes and whisper, "Its ok Maxxy, they just want to help you... " Even though, to him it doesn't feel that way.
Then of course, the final chapter in my trusting physicians. The school assumed he had an ear infection, I knew other wise but to appease them I took him to the doctor, this jackass doctor who could not get a look in his ears, ultimately jumped on his back, while Max screamed, the doctor had his forearm pinning Max's neck to the table as he screamed and screamed. I told the doctor to get off of him... WE ARE DONE HERE! I never took him back there, I filed a complaint with the hospital.... and guess what? Nothing happened, he is still there probably mistreating other patients with disabilities. It makes me sick to think about that day.
I am sickened by the fact that instead of doing something to lessen the fear of children like mine, a lot of times its made worse by doctors that have NO bedside manner. My son is a human being and should NEVER be treated like anything less, and he has been, so many times. I can't remember what that code of conduct a doctor goes by is called, but part of it says "First do no harm" and my sweet sweet boy has suffered at the hands of many who don't abide by that. People like this particular doctor should not be practicing medicine. If you want to know his name because you are in my area and are looking for a doctor, email me. Don't make the same mistake I did, our children deserve so much better. They deserve the same care, concern and respect as anyone, in fact I think they deserve more.
Until tomorrow
Monday, December 16, 2013
Day #45
Sorry about my rampage yesterday!! Since I have complained for a few days.... I'll change the tone tonight.
I was sitting at my kitchen table... the place where I do my best thinking, and I started laughing.... couldn't stop actually. I was alone, Max asleep, Jay listening to heavy metal upstairs.... and me... hysterical all by myself. What was so funny? Its embarrassing really, but I started thinking about all the times I have fell down.... that's right, I am clumsy and have bit the dust more times than I can count.
During the late summer, Katie and I were over at one of the properties we take care of for work, it was muddy and there were earthworms everywhere.... I am terrified of earthworms. I know there is no rational for the sheer terror they instill in me, but it is still terror none the less. If it rains, I can't look down at the ground, I can't look at those coolers in the store that sell containers of them for bait, I look away mumbling "Oh my god, oh my god" walking as fast as I can to get away... as if they could jump out and get me. Its ridiculous, and its been a lifelong fear that I can't overcome.
I haven't really tried because I would have to look at them and touch them, I think its called aversion therapy or something like that. But I'm just going to stay afraid of them.
Anyway on this particular summer day we were cleaning up this yard, Katie was scooping up leaves, sticks and other yucky stuff, and I had to hold the bag.... looking away the entire time. I had at some point walked over to another part of the yard, and was standing on a slab of concrete where the earthworms must gather socially, I tripped over some vines and landed in the mud on top of them.
Katie said I always fall down in slow motion, this time I landed on a brick and mud full of earthworms. One of the most traumatic meetings with the ground I have ever had... but we laughed about it for a long time.
I don't know why I am so clumsy, whether it be ice, snow, mud, tripping over my dog, getting dragged through the yard by my dog (that's painful by the way)... sometimes nothing at all, I just end up on the ground. I imagine I could have won on America's Funniest Home Videos many times, if I had someone following me around taping me as I go.
So tonight laughter has been my medicine, and what a triumph, I can laugh at myself... all by myself, that is progress! Laughter is so good for the soul, don't you agree? I am so lucky that I have the best of friends, friends that are like sisters to me, and no matter how many times I fall down, and however muddy I may be.... they are always there to pick me up off the ground.
Until tomorrow.........
I was sitting at my kitchen table... the place where I do my best thinking, and I started laughing.... couldn't stop actually. I was alone, Max asleep, Jay listening to heavy metal upstairs.... and me... hysterical all by myself. What was so funny? Its embarrassing really, but I started thinking about all the times I have fell down.... that's right, I am clumsy and have bit the dust more times than I can count.
During the late summer, Katie and I were over at one of the properties we take care of for work, it was muddy and there were earthworms everywhere.... I am terrified of earthworms. I know there is no rational for the sheer terror they instill in me, but it is still terror none the less. If it rains, I can't look down at the ground, I can't look at those coolers in the store that sell containers of them for bait, I look away mumbling "Oh my god, oh my god" walking as fast as I can to get away... as if they could jump out and get me. Its ridiculous, and its been a lifelong fear that I can't overcome.
I haven't really tried because I would have to look at them and touch them, I think its called aversion therapy or something like that. But I'm just going to stay afraid of them.
Anyway on this particular summer day we were cleaning up this yard, Katie was scooping up leaves, sticks and other yucky stuff, and I had to hold the bag.... looking away the entire time. I had at some point walked over to another part of the yard, and was standing on a slab of concrete where the earthworms must gather socially, I tripped over some vines and landed in the mud on top of them.
Katie said I always fall down in slow motion, this time I landed on a brick and mud full of earthworms. One of the most traumatic meetings with the ground I have ever had... but we laughed about it for a long time.
I don't know why I am so clumsy, whether it be ice, snow, mud, tripping over my dog, getting dragged through the yard by my dog (that's painful by the way)... sometimes nothing at all, I just end up on the ground. I imagine I could have won on America's Funniest Home Videos many times, if I had someone following me around taping me as I go.
So tonight laughter has been my medicine, and what a triumph, I can laugh at myself... all by myself, that is progress! Laughter is so good for the soul, don't you agree? I am so lucky that I have the best of friends, friends that are like sisters to me, and no matter how many times I fall down, and however muddy I may be.... they are always there to pick me up off the ground.
Until tomorrow.........
Sunday, December 15, 2013
Day # 44
Day # 42 was a rough day for me. It has taken two days of pining and pacing to figure out all of these emotions that have been banging in my head all weekend. I think I have finally figured it out.
I am not only angry, I am hurt, and let me explain what and why....
Max has been wetting his pants all day for months. He goes through different kinds of stims all the time. That's what I thought this was. Shortly after school started we had a urine sample done... no yeast, no bacteria, no sugar. Totally clear. We tried different tactics to try to fix the problem.... none of which worked, so I agreed to have him seen in IA City. We finished the paperwork Friday, an hour later the school nurse called and said that he could be seen on Wednesday. I was reluctant to accept that appointment, because I cant afford to take the day off work. I assumed as with anything this would be an appointment that would take a few weeks to schedule as did everyone else, and I was instantly made to feel guilty that I did not want to accept that appointment with such short notice. As I would be losing more income that I can't afford to lose... I have two sons to support by myself, and I don't get sick days, vacation days or personal days.
Clearly no one on my team in the school district is a single Mom. So instead of understanding my financial position, I was met with the comment, "If it were my son, I would want to know if there was something medically wrong with him" AS IF I DON'T!!! I was mortified. I love my children and would do anything in the world for them....... but this week I need to be able to feed them. Now because of this guilt trip, I will have to borrow money to do that. I have to lose income and add the cost of getting him to the appointment to an already empty piggy bank.
I am sick to my stomach that anyone would imply that I don't care. I care, more than anyone ever will. I also know this could be a stim, it could be puberty, it could be behavioral, and by the way I should mention that he usually doesn't wet his pants when he's with Grandma.... so this potential medical problem doesn't happen all day every day.
So I am taking him to this appointment because I will feel like a terrible Mother if I don't, I just wish it had of been a week or two later.
I don't care about my son? That's why I moved 13 times between 3 states trying to find a school district that would help him. We did ABA for 3 years in my home, I have traveled near and far to doctors, tried countless different medical treatments......and on and on. Not being happy about one appointment that is going to make it harder to support my children this week......does NOT mean I don't care.....
Until tomorrow.........
I am not only angry, I am hurt, and let me explain what and why....
Max has been wetting his pants all day for months. He goes through different kinds of stims all the time. That's what I thought this was. Shortly after school started we had a urine sample done... no yeast, no bacteria, no sugar. Totally clear. We tried different tactics to try to fix the problem.... none of which worked, so I agreed to have him seen in IA City. We finished the paperwork Friday, an hour later the school nurse called and said that he could be seen on Wednesday. I was reluctant to accept that appointment, because I cant afford to take the day off work. I assumed as with anything this would be an appointment that would take a few weeks to schedule as did everyone else, and I was instantly made to feel guilty that I did not want to accept that appointment with such short notice. As I would be losing more income that I can't afford to lose... I have two sons to support by myself, and I don't get sick days, vacation days or personal days.
Clearly no one on my team in the school district is a single Mom. So instead of understanding my financial position, I was met with the comment, "If it were my son, I would want to know if there was something medically wrong with him" AS IF I DON'T!!! I was mortified. I love my children and would do anything in the world for them....... but this week I need to be able to feed them. Now because of this guilt trip, I will have to borrow money to do that. I have to lose income and add the cost of getting him to the appointment to an already empty piggy bank.
I am sick to my stomach that anyone would imply that I don't care. I care, more than anyone ever will. I also know this could be a stim, it could be puberty, it could be behavioral, and by the way I should mention that he usually doesn't wet his pants when he's with Grandma.... so this potential medical problem doesn't happen all day every day.
So I am taking him to this appointment because I will feel like a terrible Mother if I don't, I just wish it had of been a week or two later.
I don't care about my son? That's why I moved 13 times between 3 states trying to find a school district that would help him. We did ABA for 3 years in my home, I have traveled near and far to doctors, tried countless different medical treatments......and on and on. Not being happy about one appointment that is going to make it harder to support my children this week......does NOT mean I don't care.....
Until tomorrow.........
Saturday, December 14, 2013
Day # 43
Today myself, Max, Grandma, Aunt Tiki, Katie and Asher met at the annual Christmas party. A party put together by a local restaurant, specifically for children and adults with disabilities. Every year everyone has so much fun.... except Max. I always hope he will enjoy it, but he never does.
As I was leaving the party, I noticed a section of the restaurant had been turned into a dance floor, and it was filled with children and adults with disabilities dancing to Christmas music. It just warmed my heart to see them all having so much fun, all their beautiful faces enjoying their party and having such a great time.
I adored their innocence, and loved watching Santa Claus go talk to each table and give away candy canes. Katie got a kick out of Santa telling Asher that he'd be watching, so he'd better be a good boy.
As I walked out the door to leave, I thought to myself, what a special day that was to so many people. For those couple of hours they belonged, they were with family and friends that love them. It brought back to life the meaning of the season to me... that I forget when I'm lost in my moments of madness. Its Christmas time, and all of the people in that party were excited about Santa Claus, presents, parties. They are happy, and more often than not, people disregard them.
Its not a disability that makes our kids, or anyone else that was a guest at the party.... "Special"
What makes them special, is they are kind, when others aren't, they are loving, even to people that aren't nice to them, they are genuine, and see the good in people. They still believe in the magic of the holidays. Most of us get upset because we can't buy what we want, or do what we want. These special people should be a reminder to so many, that love, kindness and compassion are what's important..... people are what's important. Whether its Christmas time or not.
Until tomorrow.......
As I was leaving the party, I noticed a section of the restaurant had been turned into a dance floor, and it was filled with children and adults with disabilities dancing to Christmas music. It just warmed my heart to see them all having so much fun, all their beautiful faces enjoying their party and having such a great time.
I adored their innocence, and loved watching Santa Claus go talk to each table and give away candy canes. Katie got a kick out of Santa telling Asher that he'd be watching, so he'd better be a good boy.
As I walked out the door to leave, I thought to myself, what a special day that was to so many people. For those couple of hours they belonged, they were with family and friends that love them. It brought back to life the meaning of the season to me... that I forget when I'm lost in my moments of madness. Its Christmas time, and all of the people in that party were excited about Santa Claus, presents, parties. They are happy, and more often than not, people disregard them.
Its not a disability that makes our kids, or anyone else that was a guest at the party.... "Special"
What makes them special, is they are kind, when others aren't, they are loving, even to people that aren't nice to them, they are genuine, and see the good in people. They still believe in the magic of the holidays. Most of us get upset because we can't buy what we want, or do what we want. These special people should be a reminder to so many, that love, kindness and compassion are what's important..... people are what's important. Whether its Christmas time or not.
Until tomorrow.......
Friday, December 13, 2013
Day #42
I've heard the expression a hundred times that says, "Put yourself on the list" Amongst the 5000 things we as mothers have to do in a day.... we are somehow supposed to put ourselves on that list. I would have to be # 5001. But today I realized why that is important and I need to figure out how to fit myself in.
I have had hundreds of days that feel like more than I can handle..... today was one of those days. Everything annoyed me, everything upset me and sadly everything overwhelmed me. I had a really hard time getting seat belted in on my emotional rollercoaster, and a couple of those big climbs to those big loops that take you upside down.... left me feeling like I was free falling. I, have no idea how to pack a parachute, but did I ever need one.
I think sometimes the biggest issue is money, and the fact that I never have enough. I can't rob Peter to pay Paul because I don't know where Peter is, but Paul bugs me all the time. Someday that will change, but today is not the day.
I heard on the radio today that 1 in 5 people will be rich at some point in their life for at least one year. So maybe it will start in January of 2014, how fabulous would that be. An entire year to enjoy financial freedom and not have to panic knowing you have to miss work to take your child to the doctor out of town. Not having to panic would be such a nice feeling.
I lost my mind about that very thing today. Its Christmas time and I have to take a day off of work, at our slowest time of the year, when every hour plays a huge role in sinking or swimming. I was hoping this would be the week that got me close to shore, instead I got pushed back out in the water, and get to spend another week hoping I don't sink. So not only do I need to learn how to pack a parachute, I need a life raft.
Its possible I have the winning lottery numbers, so maybe I should check. Imagine how your life would change, and how much more you could do for your children. Doesn't seem fair that one of us hasn't won it yet. I know if you're reading this that you would be just like me.... changing the lives of so many people. Wouldn't it be fun? After I did what I needed to do for my family and friends and helped all the people I could help.... I would go see Phantom of the Opera, over and over, then go see if Criss Angel could really levitate me, I have to know!! Hmmmm, just think of it! Wouldn't you like to know how Mr. Angel does what he does?
However close I came to hitting the ground face first today, I ended the day uninjured.. Thank goodness, I wonder how many of us are #5001 on the list and where we are supposed to insert ourselves on that list in the first place.
Until tomorrow.......
I have had hundreds of days that feel like more than I can handle..... today was one of those days. Everything annoyed me, everything upset me and sadly everything overwhelmed me. I had a really hard time getting seat belted in on my emotional rollercoaster, and a couple of those big climbs to those big loops that take you upside down.... left me feeling like I was free falling. I, have no idea how to pack a parachute, but did I ever need one.
I think sometimes the biggest issue is money, and the fact that I never have enough. I can't rob Peter to pay Paul because I don't know where Peter is, but Paul bugs me all the time. Someday that will change, but today is not the day.
I heard on the radio today that 1 in 5 people will be rich at some point in their life for at least one year. So maybe it will start in January of 2014, how fabulous would that be. An entire year to enjoy financial freedom and not have to panic knowing you have to miss work to take your child to the doctor out of town. Not having to panic would be such a nice feeling.
I lost my mind about that very thing today. Its Christmas time and I have to take a day off of work, at our slowest time of the year, when every hour plays a huge role in sinking or swimming. I was hoping this would be the week that got me close to shore, instead I got pushed back out in the water, and get to spend another week hoping I don't sink. So not only do I need to learn how to pack a parachute, I need a life raft.
Its possible I have the winning lottery numbers, so maybe I should check. Imagine how your life would change, and how much more you could do for your children. Doesn't seem fair that one of us hasn't won it yet. I know if you're reading this that you would be just like me.... changing the lives of so many people. Wouldn't it be fun? After I did what I needed to do for my family and friends and helped all the people I could help.... I would go see Phantom of the Opera, over and over, then go see if Criss Angel could really levitate me, I have to know!! Hmmmm, just think of it! Wouldn't you like to know how Mr. Angel does what he does?
However close I came to hitting the ground face first today, I ended the day uninjured.. Thank goodness, I wonder how many of us are #5001 on the list and where we are supposed to insert ourselves on that list in the first place.
Until tomorrow.......
Thursday, December 12, 2013
Day # 41
I am still shocked sometimes... well pretty much all the time regarding the people who think they are experts regarding our children because they have some letters behind their name. You know who I mean... that doctor that has saw your child one time, but because he or she may have another autistic patient...they think they know yours. The expert brought into school that just got his or her degree who again, has never met your child, but knows everything about what will work for ANY situation. I am an expert on my child, my credentials are the last 15 years of 24 hour care and concern and love. I'm not saying that all budding experts are like that, but there are a lot of them, and I'm not saying that what they suggest is always wrong, or always a bad idea, but rather they should spend more time learning about each child individually, step out from under the enormous autism umbrella, because each of our kids is different, just like raindrops.
Some of our kids are stormy, some are a steady rain, and some just sprinkle.... and that "Right" expert... aside from us, does sometimes come along with answers, ideas and help, that makes a huge difference. But, until they get drenched in all the different forms of autism, they really haven't got a clue.
For example, your kiddo knows at 3pm, he's going home, school is over for the day, but someone needs to talk to you right away...and it is really something that is going to take a long time to discuss, they keep talking, and handing you more papers... explaining each one as they go. Your child is getting anxious, you can see it in their body language, in their face.. instantly you can feel your chest getting tighter and its getting harder to breathe. You know you have to leave because its about to become a down pour in your child.... they still keep talking. By this time you can hear nothing they are saying because your heart is beating so loud, and your child is starting to pace, trying to get out of your grasp because they need to leave.... they keep talking. That "expert" finally notices your kiddo is getting anxious, and says, "Is he ok?" You politely say you have to leave, and finally escape this situation, by then its to late... its already started to rain, and a lot of times the sun doesn't come back.
You have to spend hours trying to stop the storm, because that 10 minutes, or even just 5 minutes messed up his entire routine. It is so hard to get people to understand that a lot of the time... Frustrating isn't it?!!
I think that "expert" needs to put down the umbrella and stand in the middle of your storm. If they do that.... maybe they could help us bring our children more sunshine.
Until tomorrow..............
Some of our kids are stormy, some are a steady rain, and some just sprinkle.... and that "Right" expert... aside from us, does sometimes come along with answers, ideas and help, that makes a huge difference. But, until they get drenched in all the different forms of autism, they really haven't got a clue.
For example, your kiddo knows at 3pm, he's going home, school is over for the day, but someone needs to talk to you right away...and it is really something that is going to take a long time to discuss, they keep talking, and handing you more papers... explaining each one as they go. Your child is getting anxious, you can see it in their body language, in their face.. instantly you can feel your chest getting tighter and its getting harder to breathe. You know you have to leave because its about to become a down pour in your child.... they still keep talking. By this time you can hear nothing they are saying because your heart is beating so loud, and your child is starting to pace, trying to get out of your grasp because they need to leave.... they keep talking. That "expert" finally notices your kiddo is getting anxious, and says, "Is he ok?" You politely say you have to leave, and finally escape this situation, by then its to late... its already started to rain, and a lot of times the sun doesn't come back.
You have to spend hours trying to stop the storm, because that 10 minutes, or even just 5 minutes messed up his entire routine. It is so hard to get people to understand that a lot of the time... Frustrating isn't it?!!
I think that "expert" needs to put down the umbrella and stand in the middle of your storm. If they do that.... maybe they could help us bring our children more sunshine.
Until tomorrow..............
Wednesday, December 11, 2013
Day # 40
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.........
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.........
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....
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