It's weird not working, I wake up every morning and look out and think oh my god, thank you for not making me go out into the world and deal with all the bullshit of the day. Do I deserve to not work? I don't want to work for someone else and have them make decisions that impact my life, without even taking my life into account and that is what happens when you work for someone else. It really is drudgery! Sure you meet some great people and make lasting friendships but by believing all the hype about having a steady job with secure income and secure benefits etc, it really is a lie. Nothiing is secure, nothing is steady and relying on someone else to decide what you are worth just makes for misery. I can't help but judge myself sometimes because I am so conditioned to believe that your worth is based on your work and what you do and how lazy you are or aren't and whether or not you are a good little compliant employee. UGH! I get mad at myself sometimes because I am home alone and LOVING it, playing around listening to music, writing, thinking, dreaming, I can't help but wonder if that is so bad? Why do I sometimes feel like a lazy bum, when I am doing what I love to do and being a better parent, because of it. I am no longer exhausted and resentful, and that has to be a good thing. There has to be a place for me in this world where I can earn and enjoy making my living. There has to be a place for all of us where we use our God given talents to contribute to our lives and our work and not resent it. I am on a mission to find this middle ground, and I am on a mission to put all my thoughts about what I "should" be doing on hold, and kind of just live and be and trust that the right opportnity has already come along and it isn't something out there, it is something inside that I already know but will only be revealed to me if I am open enough to allow it to come out. Much of this self discovery is due to my son's autism. He deserves a mom who is happy and well taken care of inside and out. I never lost the ability to want to play. I love to dance around the house singing at the top of my lungs, or sitting home alone, playing with my hair and a curling iron and seeing what I can do with no one around to bother me. I love stealing a cat nap or watching my favorite old sitcoms or music videos on you tube. I love to write and think and explore where I am and what got me here. Everyone deserves this kind of life and I would be the first person to encourage someone to take that chance. I have a ways to go wih accepting that I am worth it and that I do not have to struggle and fight and resent and earn the right to play. Usually my best ideas, plans, luck etc come out when I step aside and allow. When I give up the struggle and surrender to the impulses inside of me that say, relax, take it easy, "be still and know that I just 'am'" Be still and know that I am , Be still and know that I am Be still and know that I am . Yet it bears repeating one last time, Be still and know that I am .
Friday, October 28, 2011
Tuesday, October 25, 2011
The Ipad
Well it's been about a month since I opened that sleek little box, and to say I am amazed is an understatement. I sit and listen to those fingers tap tap tapping on the keys and my heart just explodes. This was a different experience, one I didnt force on him, I got the little miracle machine, I downloaded some apps, gave him permission to use it, and all of a sudden he just welcomed it into his world.
He puts his headphones on and I sit in awe watching him play his color slaps and shape slaps, he is popping balloons while they count, he is answering questions about what emotions the people in the pictures are feeling, he is matching sounds to their source, answering questions about who helps you when you are in trouble, who do you go to when you are sick, what is a healhy food, and what is not a healthy food. So much communication, so much information coming out that I didn't even know that he knew. One month ago, I was watching him wander around the yard with his music, now I am watching him activate apps, clap for himself, sit focused for hours at a time. He is asking to take the ipad in the car with him, he sits on the porch tapping away. Who would have known? Last night I was watching him and he actually had this very blog up on the screen and was looking at it. I am hearing sounds, that I didnt even know the ipad could make. This is no accident, this machine is a miracle. I can't help but be in amazement as in my previous post, I said, I had zero expectations, for this. i was going to let it go and see what happened. If he didnt like it, I would sure put it to good use, but I presented it to him at a point of surrender. I let go and didnt force it on him, and lo and behold, he loves it and it is showing me how much more is stored up in that brain of his that I was unable to gage due to the lack of speech. Now since I am getting older, and smarter about the ways of the world, I can't help but point out the life lesson here.
Surrender! Sure it's great to have goals and hope for the best, but when you are objectively able to live your life in such a way that you realize there is a higher source that knows what is best, you can take those chances without becoming dependent on what YOU think the outcome should be. This is where I think we all set our selves up for failure. How many times did I put my faith in the actual object or desire I had only to be let down again and again. maybe the trick here is putting our faith in faith. Could it be that easy?
He puts his headphones on and I sit in awe watching him play his color slaps and shape slaps, he is popping balloons while they count, he is answering questions about what emotions the people in the pictures are feeling, he is matching sounds to their source, answering questions about who helps you when you are in trouble, who do you go to when you are sick, what is a healhy food, and what is not a healthy food. So much communication, so much information coming out that I didn't even know that he knew. One month ago, I was watching him wander around the yard with his music, now I am watching him activate apps, clap for himself, sit focused for hours at a time. He is asking to take the ipad in the car with him, he sits on the porch tapping away. Who would have known? Last night I was watching him and he actually had this very blog up on the screen and was looking at it. I am hearing sounds, that I didnt even know the ipad could make. This is no accident, this machine is a miracle. I can't help but be in amazement as in my previous post, I said, I had zero expectations, for this. i was going to let it go and see what happened. If he didnt like it, I would sure put it to good use, but I presented it to him at a point of surrender. I let go and didnt force it on him, and lo and behold, he loves it and it is showing me how much more is stored up in that brain of his that I was unable to gage due to the lack of speech. Now since I am getting older, and smarter about the ways of the world, I can't help but point out the life lesson here.
Surrender! Sure it's great to have goals and hope for the best, but when you are objectively able to live your life in such a way that you realize there is a higher source that knows what is best, you can take those chances without becoming dependent on what YOU think the outcome should be. This is where I think we all set our selves up for failure. How many times did I put my faith in the actual object or desire I had only to be let down again and again. maybe the trick here is putting our faith in faith. Could it be that easy?
Monday, October 24, 2011
Tuesday, October 18, 2011
Educating the masses
Yesterday, I was at Walgreens picking up Zach's prescriptions. For some reason the man behind the counter insisted I owed him a co-pay even though he has two full insurances. One covers the cost of the prescription and one covers the co-pay. Now I have been getting and keeping track of my boy's meds for over ten years and never once did I have to pay a co-pay, so I was a little perturbed that he just kept insisting that I had one. I asked him to run it through again, with both insurances, I am positive he just went through the fake motions, because within a minute he told me that the store was indeed correct and the co-pay was denied. Granted the co-pay was only about 6 dollars but it was the principal of the thing. If I had to pay co-pays for all of Zach's meds, I would need to take out a second mortgage on my home. So I payed the guy begrudgingly and decided to call the insurance companies. I called Geisinger Plus, and was put on hold for at least a half hour, listening to the lovely elevator music and the reasons why I absolutely need to get a flu shot. Finally I talk to a live person and I explained the situation to her. She got a little snotty with me and told me that she cannot speak to me about my son's medications. He is over 14 and he needs to be the one to ask the information. Without trying to make a fool out of her, I told her he is non-verbal and doesn't speak. So she then asks me if I have power of attorney over him. My question to her was "Power of Attorney? over my minor son? She asked if Zach was home and if she could speak with him. I couldn't help but laugh, and I told her he was at school, but promised her that even if he WAS home, I am sure he would allow his mother to get information on him, since he will not even hold a phone to his ear. Again, I am put on hold. More elevator music, more pressure to get a flu shot. She comes back to the phone and states that she spoke with her supervisor and he is going to send us paperwork out that Zach needs to sign giving them permission to speak with me about his medication information. I informed her that Zach cannot read or write, and at this point I was picturing me reading this long HIPPA law to Zach and asking him to sign it and I started cracking up laughing. So again I am put on hold, more elevator music and MORE pressure to get the damn flu shot. So she gets back on the phone and said her supervisor needs to cover all the bases and even if Zach scribbles on the paper with a crayon, that will suffice. So that was that, I was not able to get a single bit of info about Zach's meds until he scribbles on a piece of paper and I date it. I wonder if they will let me write his name with dots and let him connect them so he could write his name legibly. ( To be continued )
I couldn't make this shit up if I tried.
I couldn't make this shit up if I tried.
Friday, October 14, 2011
To all of us
This was a poem I wrote about 5 years ago, that I just found.
Poetry: Autism
by Lesa Shusta
to all of us who went on with our everyday activities and smiled when we knew deep down something was very very wrong
to all of us who did the secret research when no one else knew
to us who tried as we might but couldn't deny it
to all of us brave enough to face the truth
and hear "those words"
and still went home and carried on..... making dinner, paying bills going to work, grooming ourselves and our children, while our worlds were spinning out of control
To us who accepted, protected, fought, cried, begged, and wondered how we were going to tell our boss, our parents, our grandparents, our friends with typical children, strangers in the community
to all of us who had the unwavering hope in the beginning that we would beat this
to us who have lost sleep, canceled plans, dreaded simple activities such as haircuts
to all of us who put on a brave face
and to all of us who broke down in public
To those who changed a diaper much larger than a diaper should ever be
and who go without every single day
who groom our teenagers with love and dignity
to us who are brave and petrified at the same time
who know the meaning of the term a hard days night all too well
who breathed a sigh of relief that a car was not speeding down the road when our child darted out
and who went on
and go on
everyday
you are not alone
we will not fail our children
we will pull the strength from somewhere...
We will pull it from each other
Lesa Shusta
Poetry: Autism
by Lesa Shusta
to all of us who went on with our everyday activities and smiled when we knew deep down something was very very wrong
to all of us who did the secret research when no one else knew
to us who tried as we might but couldn't deny it
to all of us brave enough to face the truth
and hear "those words"
and still went home and carried on..... making dinner, paying bills going to work, grooming ourselves and our children, while our worlds were spinning out of control
To us who accepted, protected, fought, cried, begged, and wondered how we were going to tell our boss, our parents, our grandparents, our friends with typical children, strangers in the community
to all of us who had the unwavering hope in the beginning that we would beat this
to us who have lost sleep, canceled plans, dreaded simple activities such as haircuts
to all of us who put on a brave face
and to all of us who broke down in public
To those who changed a diaper much larger than a diaper should ever be
and who go without every single day
who groom our teenagers with love and dignity
to us who are brave and petrified at the same time
who know the meaning of the term a hard days night all too well
who breathed a sigh of relief that a car was not speeding down the road when our child darted out
and who went on
and go on
everyday
you are not alone
we will not fail our children
we will pull the strength from somewhere...
We will pull it from each other
Lesa Shusta
Tuesday, October 11, 2011
How Life has changed
Well it's been two months now since I have decided to leave my job, and give myself some much needed respite from the rat race. I wake up in the morning and there is so much peace in the house. All of the nonsense that used to go on every morning has miraculously disappeared and I am starting to realize where much of the sludge came from. It's hard to explain just how difficult it is raising a child with autism. Routine is so important and those mornings when times seems to fly by, those kind of mornings where you stand by the cofee machine waiting for it to get done and you look and 20 precious minutes have gone by and you have done absolutely nothing.
Some mornings I would send Zach into the shower while I ran around trying to pull my self together ( a task that gets harder and harder as the years go by) I would give him about 20 minutes in the shower before I would go in and supervise and make sure he is washing up and not just playing around. So I would hear the shower running, knock on the door thinking that he was in the shower, only to find him sitting nude on the toilet, with a towel over his head laughing his ass off. These moments are sweet and funny but not when you have that constant tick tick tick of the clock in your ear. So I start yelling, Zach!!!! The bus is going to be here in 15 minutes you still have to shower, take your meds, eat, brush your teeth, get dressed, and then start your routine of finding the perfect electronic music device that you are going to take to school that day. UGH! So the panic would start to creep in, and I would start pushing and prodding and put him in the shower and wash him up my self, ( yep thats what I have to do ) Meanwhile anything I did myself to my hair or makeup was imediately ruined by the steam of the shower and the sweating and panicking of not getting to work on time. Zach has no concept of time, nor does he care about time, he moves along slowly enjoying the cool water and the soapy loofah while I am getting out his meds, putting toothpaste on his brush, running outside to my trunk to get his lunch and snack that I had to hide so he wouldn't wake up in the middle of the night and eat it. I still have to get dressed, get my stuff together, I go to get his clothes that I carefully laid out the night before, only to find that he found them and threw them down the cellar and mixed them nicely in with the dirty laundry laying in the basket. I try to find him different clothes only to realize that they are all thrown down the cellar and mixed in with the dirty clothes. By this time, I am going through the clothes trying to find the cleanest dirty ones, throw them in the dryer with a fresh dryer sheet, get him out of the shower only to find that there are no clean towels, despite the fact that I just washed them all the day before. (Zach has a habit of getting up in the middle of the night, and he has himself quite the little party, he takes a few showers, changes into new clothes each time he does and throws the clothes and the towels in the basement when he is done with them.) So I am doing all of this, meanwhile the damn cat is so pissed that I haven't fed him yet, he is running through my legs trying to trip me. I am drying Zach off with my robe, because it is the only dry thing in the house, I convince him to please take his meds before he brushes his teeth, cuz, well it just seems like it would be more pleasant for him that way. He takes his meds,, starts to brush his teeth, I run upstairs and look in my closet and hate everything I own, plus I look like I just ran the new york marathon and I figure you can't shine shit, so I throw on whatever I can find, not even remembering that I may have worn the same outfit one day prior. I come downstairs and Zach is still nude brushing his teeth and taking his own sweet time. I run down the cellar to get the clean dirty clothes out of the dryer all the while looking at the huge piles of laundry that will be waiting for me when I get home from work. I have to get him get dressed, realize his shorts are on backwards ( and by this time, I couldn't care less), his socks are not as white as I would have liked them to be. He has stubble growing all over his face, even though I swear I shaved him the day before yesterday. I take a big gulp of coffee which has been sitting there for twenty minutes, only to discover it is ice cold. I can't find my keys, the clock is ticking, the bus is late, his mp3 player is dying, I have a bag full of double A batteries, but the one he wants to take to school today requires TRIPLE A batteries, which of course I have none of. A minor meltdown ensues, while he tries to jam double A's into triple A sockets, I try to convince him to please take one of his other music sources ( and make a mental note to PICK UP TRIPLE A BATTERIES) He is having none of it, so I run upstairs and try to find a remote control with triple A batteries so he will calm down. Meanwhile the cat is squirming in and out of my path, crying and begging to be fed. Finally, I have to leave, and I am leaving Zach with Ronnie till his bus comes because I am now late, so is Ron and so is the bus. I get in my car, look and of course the gas tank is on empty. I drive to work, my mind concentrating on everything but the road, I start thinking about all of the tasks I need to do once I get to work. I am praying that Ron doesn't call me to tell me of another catastrophe caused by a glich in the routine. I walk into work, look around to see if anyone is looking, if they aren't I sign in at regular time even though I am about 7 minutes late ( which isn't bad when you think about what I went through to get there) I sit down at my desk EXHAUSTED, and some well meaning friend comes to me and says, boy you missed a spot in the back of your hair, it's all straight except for one big nappy curl. I laugh it off but mentally I am either thinking "screw you" OR I start feeling sorry for myself and start remembering the days when I actually cared about what I looked like and how I presented myself. It begins to dawn on me that I mentally and physically just put in a full shift , yet it is only 8:20 AM. I am still miffed about the hair comment, I didn't pack anything for lunch, but it doesn't matter because my lunch will be spent running out for Triple a batteries, or was it double A batteries? Will I have enough gas to get to the store and get back to work, or will I need to stop on the way? Through all of these days, I come to find out that the funding for my job was going to be cut and the job I was offered required almost double the amount of work as my old one, the need to be at work a half hour earlier each day and a pay cut of $3.00 less per hour.
Now they say that the universe gives you sign posts all of the time to guide you on what direction your life should be going in. The universe was clobbering me over the head with a baseball bat. I just couldn't keep this up anymore. I was scared to death to do it, but I summoned up the blind faith to say enough is enough is enough is enough. With no particular plan in place, I listened to my inner voice which used to whisper, but lately began to shout " take a leap of faith, stop putting all your energy into NOTHING, remember the definition of insanity" ( doing the same thing over and over and expecting different results) and just let it go! Trust that something bigger is at play. So I did, and here I am sitting at my computer watching the sun come through the window, and sharing with all of my dear readers how I got to where I am right now. I pray that I made the right choice. I am going to follow my heart and write, I am going to write and share until I can't write and share any longer. I am changing how I look at everything, being practical, logical, and untrue to myself, was not working. It was affecting my ability to parent, to be a friend, a daughter, a lover and a person who has more to give than just going through the motions everyday to stay stagnant, broke, unfullfilled and unhappy. I have no idea where this road may take me, it may bring me to foreclosure on my home, it may ruin my already damaged credit, it may make people think I have lost my mind, but that is a chance i decided I am willing to take. I will never know where it would lead if I didn't take the leap. For now, I am enjoying being a stay at home mom for the first time in 17.5 years. So let's see where this takes me. Thanks to eveyone who has been following this blog. It is very therapeutic for me to write, and I can't wait to see where this change takes me, one thing I know for sure, I would never know unless I put my fear aside and took the leap.
Some mornings I would send Zach into the shower while I ran around trying to pull my self together ( a task that gets harder and harder as the years go by) I would give him about 20 minutes in the shower before I would go in and supervise and make sure he is washing up and not just playing around. So I would hear the shower running, knock on the door thinking that he was in the shower, only to find him sitting nude on the toilet, with a towel over his head laughing his ass off. These moments are sweet and funny but not when you have that constant tick tick tick of the clock in your ear. So I start yelling, Zach!!!! The bus is going to be here in 15 minutes you still have to shower, take your meds, eat, brush your teeth, get dressed, and then start your routine of finding the perfect electronic music device that you are going to take to school that day. UGH! So the panic would start to creep in, and I would start pushing and prodding and put him in the shower and wash him up my self, ( yep thats what I have to do ) Meanwhile anything I did myself to my hair or makeup was imediately ruined by the steam of the shower and the sweating and panicking of not getting to work on time. Zach has no concept of time, nor does he care about time, he moves along slowly enjoying the cool water and the soapy loofah while I am getting out his meds, putting toothpaste on his brush, running outside to my trunk to get his lunch and snack that I had to hide so he wouldn't wake up in the middle of the night and eat it. I still have to get dressed, get my stuff together, I go to get his clothes that I carefully laid out the night before, only to find that he found them and threw them down the cellar and mixed them nicely in with the dirty laundry laying in the basket. I try to find him different clothes only to realize that they are all thrown down the cellar and mixed in with the dirty clothes. By this time, I am going through the clothes trying to find the cleanest dirty ones, throw them in the dryer with a fresh dryer sheet, get him out of the shower only to find that there are no clean towels, despite the fact that I just washed them all the day before. (Zach has a habit of getting up in the middle of the night, and he has himself quite the little party, he takes a few showers, changes into new clothes each time he does and throws the clothes and the towels in the basement when he is done with them.) So I am doing all of this, meanwhile the damn cat is so pissed that I haven't fed him yet, he is running through my legs trying to trip me. I am drying Zach off with my robe, because it is the only dry thing in the house, I convince him to please take his meds before he brushes his teeth, cuz, well it just seems like it would be more pleasant for him that way. He takes his meds,, starts to brush his teeth, I run upstairs and look in my closet and hate everything I own, plus I look like I just ran the new york marathon and I figure you can't shine shit, so I throw on whatever I can find, not even remembering that I may have worn the same outfit one day prior. I come downstairs and Zach is still nude brushing his teeth and taking his own sweet time. I run down the cellar to get the clean dirty clothes out of the dryer all the while looking at the huge piles of laundry that will be waiting for me when I get home from work. I have to get him get dressed, realize his shorts are on backwards ( and by this time, I couldn't care less), his socks are not as white as I would have liked them to be. He has stubble growing all over his face, even though I swear I shaved him the day before yesterday. I take a big gulp of coffee which has been sitting there for twenty minutes, only to discover it is ice cold. I can't find my keys, the clock is ticking, the bus is late, his mp3 player is dying, I have a bag full of double A batteries, but the one he wants to take to school today requires TRIPLE A batteries, which of course I have none of. A minor meltdown ensues, while he tries to jam double A's into triple A sockets, I try to convince him to please take one of his other music sources ( and make a mental note to PICK UP TRIPLE A BATTERIES) He is having none of it, so I run upstairs and try to find a remote control with triple A batteries so he will calm down. Meanwhile the cat is squirming in and out of my path, crying and begging to be fed. Finally, I have to leave, and I am leaving Zach with Ronnie till his bus comes because I am now late, so is Ron and so is the bus. I get in my car, look and of course the gas tank is on empty. I drive to work, my mind concentrating on everything but the road, I start thinking about all of the tasks I need to do once I get to work. I am praying that Ron doesn't call me to tell me of another catastrophe caused by a glich in the routine. I walk into work, look around to see if anyone is looking, if they aren't I sign in at regular time even though I am about 7 minutes late ( which isn't bad when you think about what I went through to get there) I sit down at my desk EXHAUSTED, and some well meaning friend comes to me and says, boy you missed a spot in the back of your hair, it's all straight except for one big nappy curl. I laugh it off but mentally I am either thinking "screw you" OR I start feeling sorry for myself and start remembering the days when I actually cared about what I looked like and how I presented myself. It begins to dawn on me that I mentally and physically just put in a full shift , yet it is only 8:20 AM. I am still miffed about the hair comment, I didn't pack anything for lunch, but it doesn't matter because my lunch will be spent running out for Triple a batteries, or was it double A batteries? Will I have enough gas to get to the store and get back to work, or will I need to stop on the way? Through all of these days, I come to find out that the funding for my job was going to be cut and the job I was offered required almost double the amount of work as my old one, the need to be at work a half hour earlier each day and a pay cut of $3.00 less per hour.
Now they say that the universe gives you sign posts all of the time to guide you on what direction your life should be going in. The universe was clobbering me over the head with a baseball bat. I just couldn't keep this up anymore. I was scared to death to do it, but I summoned up the blind faith to say enough is enough is enough is enough. With no particular plan in place, I listened to my inner voice which used to whisper, but lately began to shout " take a leap of faith, stop putting all your energy into NOTHING, remember the definition of insanity" ( doing the same thing over and over and expecting different results) and just let it go! Trust that something bigger is at play. So I did, and here I am sitting at my computer watching the sun come through the window, and sharing with all of my dear readers how I got to where I am right now. I pray that I made the right choice. I am going to follow my heart and write, I am going to write and share until I can't write and share any longer. I am changing how I look at everything, being practical, logical, and untrue to myself, was not working. It was affecting my ability to parent, to be a friend, a daughter, a lover and a person who has more to give than just going through the motions everyday to stay stagnant, broke, unfullfilled and unhappy. I have no idea where this road may take me, it may bring me to foreclosure on my home, it may ruin my already damaged credit, it may make people think I have lost my mind, but that is a chance i decided I am willing to take. I will never know where it would lead if I didn't take the leap. For now, I am enjoying being a stay at home mom for the first time in 17.5 years. So let's see where this takes me. Thanks to eveyone who has been following this blog. It is very therapeutic for me to write, and I can't wait to see where this change takes me, one thing I know for sure, I would never know unless I put my fear aside and took the leap.
Subscribe to:
Posts (Atom)