"Nobody can dream a dream better than me!"
I wonder how many people of special needs kids live in poverty? Never in a million years did I think I'd be so broke. It seems I'm not alone in that regard these days, but I still optimistically look out my window hoping that money tree has finally blossomed. I suppose I have a pretty average income but the daily demands of my sons exceed every penny I bring home.
I always had dreams of the perfect marriage, successful career, financial stability... all these years however, I have just tried to maintain mental stability.
I do believe that if you can dream it, you can do it and nobody can dream a dream better than I can. It is difficult to accept that my reality is so far from my dream. I want my children to be happy, and not struggling. I want to wake up and have all of the problems they face in a day to be wiped away forever. I want their dreams to come true like any parent does for their child. I will never give up on that dream.
One of the hardest parts of this life is feeling like the world is passing us by. Its like we are stuck on this autism train, our train keeps creeping past all the "normal world" people. We get to watch them enjoy the simpleness and pleasures of life, and no matter how much I pray, or how hard I try, I can't get our train to stop so the boys and I can get out and be a part of all the world has to offer.
The "normal people" can look at us through the windows of our train, they stare, they whisper to each other, or they ignore us. I'm banging on the windows of our train screaming, "IT'S AUTISM!! IT'S AUTISM! WHY CAN'T YOU JUST UNDERSTAND! WHY DON'T YOU ASK ME ABOUT IT!!! Then I realize, until normal people can do more than whisper and stare, there is no hope of acceptance, no hope of them understanding.
I'm just a passenger on this train, just like my boys, autism is our conductor. However scary and unknown the tracks ahead of us may be, we will travel on together.
Today when I woke up I felt like a zombie, literally like the walking dead. If zombies really feel like I felt this morning, they honestly wouldn't have the energy to eat brains, seems to me like that would take an awful lot of strength. I just can't believe I can still function in the morning. I can't think, or see straight, but at least I'm awake to live another day.
Overall this day was more calm. My little angel seemed alot less interested in screaming and more interested in not letting me sit down. I don't know why, but he would get very upset when he'd find me sitting anywhere in the house. We took a long ride today and went window shopping. I can fill my imaginary dream house with all of the things I picked up on my window shopping spree.
I started the bedtime process tonight at about 8pm. This is a part of the day I dread because it will go on for hours most nights. My little angel hasn't slept in his bedroom for 8 years, he sleeps on the couch and I sleep on the love seat in the living room. People don't understand why I let him sleep on the couch, but if that is the only place he will sleep, I am not going to argue. I spend far to much time exhausted from not getting to sleep at all that I could sleep on the floor sitting up and be elated that I was getting to sleep. If he is comfortable that's fine with me.
Tonight he was oddly interested in his bedroom that I have decorated with Sponge Bob decals and yellow stars. He wanted to lay on his bed buried in 8 blankets and 5 pillows. I pulled my computer chair into his room as he wanted me to be in his room with him. He didn't want me to sit down, so for a little while I gladly stood, shocked that he was lying on his own bed after all these years. After 20 minutes of standing my knee started to hurt, I could hardly bare the pain (old injury... long story.) I'd sit down, he'd stand me back up and hit himself in the head. When he'd turn his back to me I'd sit back down, he'd stand me back up. I just wanted to cry by 10:30. I would suffer because I don't like to see him hit himself, because he hits himself really hard, hard enough to bruise his little hands. Eventually he fell asleep, so I gathered up a bunch of blankets and fell asleep on his floor. I think I'd been asleep about 15 minutes when he fell off the bed and landed on my head, and he's a big boy. My head still hurts and my cheek is a little bruised. Needless to say he is now asleep on the couch and I am writing. There is never a night here that is quick, quiet and easy. If he would just sleep I know he'd feel better, I'd feel better. Maybe this fog that envelopes my brain would lift a little and I'd start to function better. I forget things so quickly, people, places, phone numbers. It worries me that my memory seems to be fading. I wish I'd of kept a journal all these years, the memories would then be within my reach, I'd have a way to put them back in my zombie brain.
I can't believe how bad my face hurts.
Until tomorrow.....
Wednesday, December 30, 2009
Tuesday, December 29, 2009
Day #3
"I always feel like I'm on the outside looking in"
Today was yet another attempt at a "normal life" event. I try to give my sons normal experiences as often as I can. I want my sons to have those social experiences that all children have. My son with aspergers disorder really struggles with social situations. He has made some improvements over the past year with the help of a psychiatrist, psychologist and a social worker whom he sees weekly. We still work daily on how to respond too, handle and address situations he faces regularly.
Tonight we had been invited to dinner by a good friend who knows my boys very well and she and her husband were fully prepared to greet us at 6pm. I was so excited to finally have a dinner invitation like people in the normal world often do. I had to spend about 45 minutes packing fidget toys, treats, and anything else I could think of into a big orange flowered beach bag. Anything I could find that might entertain my little non verbal angel for the short while we'd be there. If he is in a new, unfamiliar place he gets very agitated and if I am not prepared the crying and screaming start within moments. I thought I had everything I needed and we hit the road. I forgot one very important thing... that orange flowered bag is the bag we take to Grandmas house and the road we were traveling to my friends house was the same road we start on to Grandmas house. He thought we were going to Grandmas. When I turned off that familiar road I knew instantly that he was not pleased, he started stomping his feet, slamming his wrists together and crying. I explained to him that we were going to see our friend and that we would go to Grandmas afterward.
When we arrived my little angel would not get out of the van. I'd open his door, he closed it, over and over and over. My heart sank to my stomach. My friend was able to get him out of the van and walk him into the house, all the while he was crying and attempting to escape her as she held his hand so he could return to the van. I told him we were going to have dinner and visit, then we would leave. I felt so bad for everyone. My hosts for cooking, my son with aspergers because he really wanted to do something that normal life people do, and my non verbal son because he was unhappy being there. As for me... well I was crushed. If I make one person happy, someone else is unhappy... there is not anyway to compromise really.
Instead of a lighthearted dinner, it was a painstaking hour of my little angel getting in and out of the van, screaming, crying, hitting himself, dragging me to the door to leave. It was just impossible.
My other son was happy to be there, thrilled to talk to my friends husband and disappointed when we left. I just felt horrible that I hadn't realized that orange flowered bag was the "Grandma Bag" One little oversight can ruin something instantly, I was reminded of that this night.
Driving away from that beautiful farm house, down that long gravel road... it hit me, like a punch in the stomach from someone that could hit really hard... This long dark gravel road was just like my life. I could feel the bumpiness of every little rock beneath the tires, just like I could feel the bumpiness of every little rock beneath us in our life. The headlights were on, but darkness surrounded the van. I just kept driving like I just keep living, hoping that the bumps will stop. Will there ever be a day that I won't have to figure everything out alone? Will I ever find a paved road with signs and directions? Will I always be on the bumpy gravel?
I knew as I drove through the darkness that I was always going to be a single Mom. Who'd of thought that the simpleness of a gravel road and a dark sky would become so instantly symbolic of my life. I could do nothing but drive, just like I always do, I couldn't cry because I have to stay strong. I wanted to cry, I want to do it a lot sometimes, I fear if I do I won't be able to stop, and there isn't anyone at home but me to hold it together and I've been holding it together for this long right? So my moment of enlightenment, my moment of revelation.. I am a single Mom and I must accept that it may never change. Who would want to do this with me? I'm strong, geez, by now I should be able to leap small buildings in a single bound! "Its a bird, its a plane.. its autism Mom!
So reality is simply this... dark and bumpy gravel roads are not the chosen path for those who have the option to take the paved road with street lights.
Until tomorrow......
Today was yet another attempt at a "normal life" event. I try to give my sons normal experiences as often as I can. I want my sons to have those social experiences that all children have. My son with aspergers disorder really struggles with social situations. He has made some improvements over the past year with the help of a psychiatrist, psychologist and a social worker whom he sees weekly. We still work daily on how to respond too, handle and address situations he faces regularly.
Tonight we had been invited to dinner by a good friend who knows my boys very well and she and her husband were fully prepared to greet us at 6pm. I was so excited to finally have a dinner invitation like people in the normal world often do. I had to spend about 45 minutes packing fidget toys, treats, and anything else I could think of into a big orange flowered beach bag. Anything I could find that might entertain my little non verbal angel for the short while we'd be there. If he is in a new, unfamiliar place he gets very agitated and if I am not prepared the crying and screaming start within moments. I thought I had everything I needed and we hit the road. I forgot one very important thing... that orange flowered bag is the bag we take to Grandmas house and the road we were traveling to my friends house was the same road we start on to Grandmas house. He thought we were going to Grandmas. When I turned off that familiar road I knew instantly that he was not pleased, he started stomping his feet, slamming his wrists together and crying. I explained to him that we were going to see our friend and that we would go to Grandmas afterward.
When we arrived my little angel would not get out of the van. I'd open his door, he closed it, over and over and over. My heart sank to my stomach. My friend was able to get him out of the van and walk him into the house, all the while he was crying and attempting to escape her as she held his hand so he could return to the van. I told him we were going to have dinner and visit, then we would leave. I felt so bad for everyone. My hosts for cooking, my son with aspergers because he really wanted to do something that normal life people do, and my non verbal son because he was unhappy being there. As for me... well I was crushed. If I make one person happy, someone else is unhappy... there is not anyway to compromise really.
Instead of a lighthearted dinner, it was a painstaking hour of my little angel getting in and out of the van, screaming, crying, hitting himself, dragging me to the door to leave. It was just impossible.
My other son was happy to be there, thrilled to talk to my friends husband and disappointed when we left. I just felt horrible that I hadn't realized that orange flowered bag was the "Grandma Bag" One little oversight can ruin something instantly, I was reminded of that this night.
Driving away from that beautiful farm house, down that long gravel road... it hit me, like a punch in the stomach from someone that could hit really hard... This long dark gravel road was just like my life. I could feel the bumpiness of every little rock beneath the tires, just like I could feel the bumpiness of every little rock beneath us in our life. The headlights were on, but darkness surrounded the van. I just kept driving like I just keep living, hoping that the bumps will stop. Will there ever be a day that I won't have to figure everything out alone? Will I ever find a paved road with signs and directions? Will I always be on the bumpy gravel?
I knew as I drove through the darkness that I was always going to be a single Mom. Who'd of thought that the simpleness of a gravel road and a dark sky would become so instantly symbolic of my life. I could do nothing but drive, just like I always do, I couldn't cry because I have to stay strong. I wanted to cry, I want to do it a lot sometimes, I fear if I do I won't be able to stop, and there isn't anyone at home but me to hold it together and I've been holding it together for this long right? So my moment of enlightenment, my moment of revelation.. I am a single Mom and I must accept that it may never change. Who would want to do this with me? I'm strong, geez, by now I should be able to leap small buildings in a single bound! "Its a bird, its a plane.. its autism Mom!
So reality is simply this... dark and bumpy gravel roads are not the chosen path for those who have the option to take the paved road with street lights.
Until tomorrow......
Monday, December 28, 2009
Day #2
Its been a very long day and night, I feel like I should be used to it by now, after all this is all I've known for nearly a decade.
Lets talk about rigidity, and why it is my master. The smallest of changes to my son's routine cause him such panic, anxiety, frustration, beyond what most people know...or can even imagine. Swaying from his self made rituals usually cause and avalance of emotional breakdowns that go on for hours. Intense,loud and heartbreaking.
My bathroom sits between my kitchen and a bedroom, so there are 2 doors to the bathroom. My little angel enters the bathroom from the kitchen, and must stand in the doorway, staring up at the darkened ceiling as he takes very precise little steps until he is positioned directly beneath the light on the ceiling. He then turns on the light, then the fan, opens the door that enters into the bedroom, then closes it, then he closes and opens the door that enters into the kitchen. He does not stop opening and closing the doors until they make just the right amount of noise, this can take several minutes to complete before he will finally get in the bathtub.
My little angel loves the water. He loves to fill his hands with the water as its running and sprinkle it like rain into the tub. He loves to fill up cups and spill them repeatedly. If I interrupt any part of this routine or ritual, he has to start all over from the beginning, the very beginning.
There are alot of nights that he screams so loud, I get prepared for the police to show up and ask whats going on. I'm sure our neighbors must be sick of us by now. I try to keep him quiet, but the more I try to quiet him, the louder he becomes. I just want to scream right along with him. I want to scream "ITS CALLED AUTISM!! I'M TRYING TO CALM HIM DOWN BUT NOTHING IS WORKING!"
But... when my little angel is in his bathtub he is quiet, there is peace in my house, and peace in his mind.
I had a little more than 3 hours of sleep last night. Most of the time it feels like one day that never ends. My mind and body begin to recover after a couple hours of sleep, then my son wakes up and we start over. It's like I wake up with a hangover every single day, but I've not been drinking. I feel dizzy, sick to my stomach, my head hurts, my neck hurts, my eyes hurt. I live on caffeine, it keeps me awake, I can't fall asleep so I try not to ever sit down during the day.
All he wanted to do today was drive around in our minivan and listen to the same 2songs from Shine Down over and over. We've actually been listening to those 2 songs for 3 months and nothing else. I listen closely hoping I can hear what he hears in these 2 songs, I think the lead singers voice must be perfectly pitched to my sons little ears.
I put 178 miles on the vehicle today driving around in circles going nowhere, when I come home he won't come inside, he waits in the passenger seat, seatbelt still latched until I return. I don't know where to go, but I have to go.
I pass by people on the road and wonder where they are headed.... are they driving around aimlessly like I am? Are they going somewhere fun and exciting? Can they feel the storm when we pass them on the road? Do I look as tired as I feel, does anyone even notice we've driven past their house 20 times in one night? I pass by homes and wonder what people are doing in their living rooms, are they watching a movie, playing scrabble, talking with friends and family? Those things would be nice, but autism is very isolating, we don't get visitors but it would be nice to hear a knock at the door from time to time.
I finally was able to get my little angel in the house at about midnight. At 2:19 he finally closes his eyes to sleep. Now it is my turn to close my eyes.
Good night everyone.
Lets talk about rigidity, and why it is my master. The smallest of changes to my son's routine cause him such panic, anxiety, frustration, beyond what most people know...or can even imagine. Swaying from his self made rituals usually cause and avalance of emotional breakdowns that go on for hours. Intense,loud and heartbreaking.
My bathroom sits between my kitchen and a bedroom, so there are 2 doors to the bathroom. My little angel enters the bathroom from the kitchen, and must stand in the doorway, staring up at the darkened ceiling as he takes very precise little steps until he is positioned directly beneath the light on the ceiling. He then turns on the light, then the fan, opens the door that enters into the bedroom, then closes it, then he closes and opens the door that enters into the kitchen. He does not stop opening and closing the doors until they make just the right amount of noise, this can take several minutes to complete before he will finally get in the bathtub.
My little angel loves the water. He loves to fill his hands with the water as its running and sprinkle it like rain into the tub. He loves to fill up cups and spill them repeatedly. If I interrupt any part of this routine or ritual, he has to start all over from the beginning, the very beginning.
There are alot of nights that he screams so loud, I get prepared for the police to show up and ask whats going on. I'm sure our neighbors must be sick of us by now. I try to keep him quiet, but the more I try to quiet him, the louder he becomes. I just want to scream right along with him. I want to scream "ITS CALLED AUTISM!! I'M TRYING TO CALM HIM DOWN BUT NOTHING IS WORKING!"
But... when my little angel is in his bathtub he is quiet, there is peace in my house, and peace in his mind.
I had a little more than 3 hours of sleep last night. Most of the time it feels like one day that never ends. My mind and body begin to recover after a couple hours of sleep, then my son wakes up and we start over. It's like I wake up with a hangover every single day, but I've not been drinking. I feel dizzy, sick to my stomach, my head hurts, my neck hurts, my eyes hurt. I live on caffeine, it keeps me awake, I can't fall asleep so I try not to ever sit down during the day.
All he wanted to do today was drive around in our minivan and listen to the same 2songs from Shine Down over and over. We've actually been listening to those 2 songs for 3 months and nothing else. I listen closely hoping I can hear what he hears in these 2 songs, I think the lead singers voice must be perfectly pitched to my sons little ears.
I put 178 miles on the vehicle today driving around in circles going nowhere, when I come home he won't come inside, he waits in the passenger seat, seatbelt still latched until I return. I don't know where to go, but I have to go.
I pass by people on the road and wonder where they are headed.... are they driving around aimlessly like I am? Are they going somewhere fun and exciting? Can they feel the storm when we pass them on the road? Do I look as tired as I feel, does anyone even notice we've driven past their house 20 times in one night? I pass by homes and wonder what people are doing in their living rooms, are they watching a movie, playing scrabble, talking with friends and family? Those things would be nice, but autism is very isolating, we don't get visitors but it would be nice to hear a knock at the door from time to time.
I finally was able to get my little angel in the house at about midnight. At 2:19 he finally closes his eyes to sleep. Now it is my turn to close my eyes.
Good night everyone.
Sunday, December 27, 2009
Day #1
My sons new respite worker sat with me over a table full of paperwork talking about living with autism. She said one of her co workers at her day job stated "Respite workers are just glorified babysitters, and parents of special needs kids should just take care of their children like any parent of any child does"
Because of that conversation I decided to write 365 Days of Autism. Maybe my words on this 8th year of my autism journey with my non-verbal autistic son, will help those who don't understand this life. I will share 365 days of my life with you and it is my hope that you will come to understand our autism, and the lives of so many like us.
So here it begins.... Day #1
"Everyday I hold on for dear life because I have no idea where my day will begin, or when and where it will end."
This has been another night that has carried on into morning, another night without sleep, but still my mind is in overdrive. At 4:57am,I stood in the doorway of the bathroom after my little angels 9th bath of the night, helping him get dressed. I kept thinking, "How can anyone think respite care is glorified babysitting?" Parents of typical kids don't have to stay up all night, or help their kids get dressed 9 times after 9 baths. They don't have to listen to non stop screaming, crying, door slamming until the break of dawn. That is just what we do. The bathtub is the only thing that calms him down these days, it is the only thing we can do to keep him happy and quiet so my older son can get some sleep. I don't get to sleep much. I haven't slept in a bed for 8 years because my little angel wants to sleep on the couch in the living room. I get to sleep on the loveseat, and I adore the few hours a night I get to close my eyes. I have to sleep where he sleeps because I can never be sure if he's going to try to get outside. It is never ending, exhausting and tomorrow I will get to do the same thing.
Finally at 5:39am he falls asleep. Days like this I walk around so numb, my mind in a fog because I just can't get any sleep, day after day after day. It is always my hope that he will finally get a good nights sleep as well, but whether he sleeps 2 hours or 8 hours he is still raring to go. I am always so tired, I can't keep up. Sometimes I'm afraid to sleep. I wonder when my body and mind are just going to give up. How long can someone survive exhaustion? Can you die from it?
I'm a single Mom, so I do this by myself. Everyone says they couldn't do it, I tell them if this was their child they would. We all have our hills we have to climb right? I'm keeping my fingers crossed that tomorrow will be better.
Because of that conversation I decided to write 365 Days of Autism. Maybe my words on this 8th year of my autism journey with my non-verbal autistic son, will help those who don't understand this life. I will share 365 days of my life with you and it is my hope that you will come to understand our autism, and the lives of so many like us.
So here it begins.... Day #1
"Everyday I hold on for dear life because I have no idea where my day will begin, or when and where it will end."
This has been another night that has carried on into morning, another night without sleep, but still my mind is in overdrive. At 4:57am,I stood in the doorway of the bathroom after my little angels 9th bath of the night, helping him get dressed. I kept thinking, "How can anyone think respite care is glorified babysitting?" Parents of typical kids don't have to stay up all night, or help their kids get dressed 9 times after 9 baths. They don't have to listen to non stop screaming, crying, door slamming until the break of dawn. That is just what we do. The bathtub is the only thing that calms him down these days, it is the only thing we can do to keep him happy and quiet so my older son can get some sleep. I don't get to sleep much. I haven't slept in a bed for 8 years because my little angel wants to sleep on the couch in the living room. I get to sleep on the loveseat, and I adore the few hours a night I get to close my eyes. I have to sleep where he sleeps because I can never be sure if he's going to try to get outside. It is never ending, exhausting and tomorrow I will get to do the same thing.
Finally at 5:39am he falls asleep. Days like this I walk around so numb, my mind in a fog because I just can't get any sleep, day after day after day. It is always my hope that he will finally get a good nights sleep as well, but whether he sleeps 2 hours or 8 hours he is still raring to go. I am always so tired, I can't keep up. Sometimes I'm afraid to sleep. I wonder when my body and mind are just going to give up. How long can someone survive exhaustion? Can you die from it?
I'm a single Mom, so I do this by myself. Everyone says they couldn't do it, I tell them if this was their child they would. We all have our hills we have to climb right? I'm keeping my fingers crossed that tomorrow will be better.
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