Been a tough week. Been a tough life. Can't even type without the damned cat's butt in my face. Sigh. I just don't know what to do. I have no will to do anything - it's an effort just to get out of bed. I'm drained. Every time I say I don't want to fight anymore, life throws something at me that needs fighting, and I'm the only one that picks up the gloves, cause if I don't, no one else does, and nothing happens (at best) and at worst, things fall even more apart.
I don't get it. Why am I not entitled to my nervous breakdown? Because it doesn't fit into the damned schedule & no one will take care of the kids unless I can tell them the breakdown will last less than 24 hours. I'm tired. I'm tired of being super-mom, and I'm not even good at that. I feel like a crappy mom because I have even less patience since I have less help; I break into tears when I drop something...
I guess it's true, what the article said: moms who take care of special needs kids often have the same level of stress as combat soldiers. I tried to put in a link, but it's not working, so here's the address; you can cut & paste: http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/
I think the daily experience of having to be acutely aware of where my eloping son is 24 hours a day would be comparable to a soldier having to be on alert at all times, although not for the same reasons, of course. Not being able to open my windows due to the padlocks that keep my son safely inside is akin to us living in a lockdown institution. Even the group homes for autistic children are not allowed to have those kind of locks on doors & windows due to safety reasons. Geez. At least soldiers have a set tour of duty; they know in 3 years, their job is done. I don't even have that.
Wednesday, July 20, 2011
Friday, May 13, 2011
"The Secret" is A Lie
Yeah. No amount of positive thought is going to change the fact that my children have autism. I do understand that having a positive attitude can help a person get through the crap, but it is crap to say that a person brings crap on themselves by not having a positive attitude.
Mikey is low functioning, and as he goes through adolescence, has increasing frustration, and his current outlet is to bite holes in his shirt. It has gone from biting holes to completely ripping the shirt in half. Now, how am I supposed to put a positive spin on this? Hmmm, perhaps Mikey has a future in stripping - I know I'd pay good money to see a grown man rip his shirt off with his teeth. :-) (trying to be positive, here...) All kidding aside, Mikey is not a grown man - he is a struggling teen with autism, without the verbal skills to express himself. He needs help, and so do I; something a bit more concrete than, "You need a better outlook."
As I found out, asking the Regional Center for more help is pointless. They called Child Protective Services on me. I don't know this for a fact, as CPS can't tell you who reported you, but one of the incidents with Mikey happened the day before Regional Center came out to 'see how they could help', and were the only ones who knew about the other incidents. I don't know what they were trying to accomplish - to make a very long story very short, the lady from CPS was very nice; after the investigation was over, she said that she had no idea why she was called, disabled kids often had these issues & you can't predict them, and I showed that every time there was some kind of incident, I took steps to deal with it, and they were closing the case.
I am assuming that Regional Center was trying to shift the responsibility to someone else, because when they were here, Regional stated that maybe a behavioral respite group would be a good idea. I agreed, the lady was supposed to look into it, and I never heard another thing about it, nor has the behavioral group who provides Mikey with 8 hours of therapy per week. Was Regional trying to slip out of their responsibility? I don't know. Here is the Regional Center of Orange County's Mission Statement:
Regional Center of Orange County, within the spirit and mandate of the Lanterman Act, shall assist persons with developmental disabilities, and their families, in securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity and openness to innovation.
So, calling CPS, making one of my boys subject to reliving an experience he's embarrassed about & has already dealt with years ago, making me feel like an incompetent mom, NOT "securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity" but instead shifting the responsibility elsewhere... yeah.
The only positive thing that has happened regarding all of this is that I have been vindicated by CPS & RCOC can't shift the responsibility again. When I'm more calm about the whole experience (when will that be?) I have a mind to call the lady from RCOC & tell her that the next people I tell my story to will be the newspapers - I wonder if we'll get our services then?
It's crappy. The whole bloody system is crappy. I stopped having RCOC come to the kids IEP's because they & the school district would spend most of the time fighting over whose responsibility it was to provide services, and no one would do anything. I'm tired of having to fight tooth & nail for services my kids are entitled to from both the school district and RCOC by LAW, but don't get unless you take the agencies to due process/fair hearing. It's WRONG. I understand everyone's broke, the state is broke, the agencies are broke.... but the administrators of those agencies are still pulling in their 6 figure incomes (not being specific regarding certain people here, but all government employees salaries are available to the public by request).
I'm tired of excuses. From the schools, from the agencies... look, I'm a single mom, and I have 2 children with autism. I take full responsibility for choosing a crappy husband who then left us 2 months after the boys were diagnosed. That bad decision of mine does not negate the responsibility of these agencies set up to help disabled children. I'm sorry I'm not 2 people. I'm one mom, who has given up any shred of a normal life in hopes that her kids may have one someday, and it sucks when I'm beaten down at every step by the agencies who were designed to help just those kinds of kids. And no amount of positive thinking is going to change a damn thing.
June 7, 2011
Update: It wasn't RCOC. My gods, it was ACES. The behavioral group who has worked with us for years... talk about a feeling of betrayal. Been dealing with these feelings for a while now - since finding out it was ACES who reported us, I went first from feeling betrayed, to wondering if this group who has worked with us for years thinks I'm a crappy enough mom to report me, then maybe I AM a crappy mom, to wondering why a group who has worked with us for so many years still doesn't have a clue as to Mikey's proprioceptive skills & should know he was never in any danger because he can't squeeze a bottle to spray anything out in the first place.
So the group I've reported every behavioral mishap to, in hopes they can help fix the behaviors that have happened, was the one who reported the behaviors. How the hell is that supposed to help??? It's caused more issues and hasn't helped a damn thing. First of all, how am I ever supposed to trust any group out there to 'help' us, if I'm afraid to tell them what's actually going on? And so I find myself more alone than ever.
Mikey is low functioning, and as he goes through adolescence, has increasing frustration, and his current outlet is to bite holes in his shirt. It has gone from biting holes to completely ripping the shirt in half. Now, how am I supposed to put a positive spin on this? Hmmm, perhaps Mikey has a future in stripping - I know I'd pay good money to see a grown man rip his shirt off with his teeth. :-) (trying to be positive, here...) All kidding aside, Mikey is not a grown man - he is a struggling teen with autism, without the verbal skills to express himself. He needs help, and so do I; something a bit more concrete than, "You need a better outlook."
As I found out, asking the Regional Center for more help is pointless. They called Child Protective Services on me. I don't know this for a fact, as CPS can't tell you who reported you, but one of the incidents with Mikey happened the day before Regional Center came out to 'see how they could help', and were the only ones who knew about the other incidents. I don't know what they were trying to accomplish - to make a very long story very short, the lady from CPS was very nice; after the investigation was over, she said that she had no idea why she was called, disabled kids often had these issues & you can't predict them, and I showed that every time there was some kind of incident, I took steps to deal with it, and they were closing the case.
I am assuming that Regional Center was trying to shift the responsibility to someone else, because when they were here, Regional stated that maybe a behavioral respite group would be a good idea. I agreed, the lady was supposed to look into it, and I never heard another thing about it, nor has the behavioral group who provides Mikey with 8 hours of therapy per week. Was Regional trying to slip out of their responsibility? I don't know. Here is the Regional Center of Orange County's Mission Statement:
Regional Center of Orange County, within the spirit and mandate of the Lanterman Act, shall assist persons with developmental disabilities, and their families, in securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity and openness to innovation.
So, calling CPS, making one of my boys subject to reliving an experience he's embarrassed about & has already dealt with years ago, making me feel like an incompetent mom, NOT "securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity" but instead shifting the responsibility elsewhere... yeah.
The only positive thing that has happened regarding all of this is that I have been vindicated by CPS & RCOC can't shift the responsibility again. When I'm more calm about the whole experience (when will that be?) I have a mind to call the lady from RCOC & tell her that the next people I tell my story to will be the newspapers - I wonder if we'll get our services then?
It's crappy. The whole bloody system is crappy. I stopped having RCOC come to the kids IEP's because they & the school district would spend most of the time fighting over whose responsibility it was to provide services, and no one would do anything. I'm tired of having to fight tooth & nail for services my kids are entitled to from both the school district and RCOC by LAW, but don't get unless you take the agencies to due process/fair hearing. It's WRONG. I understand everyone's broke, the state is broke, the agencies are broke.... but the administrators of those agencies are still pulling in their 6 figure incomes (not being specific regarding certain people here, but all government employees salaries are available to the public by request).
I'm tired of excuses. From the schools, from the agencies... look, I'm a single mom, and I have 2 children with autism. I take full responsibility for choosing a crappy husband who then left us 2 months after the boys were diagnosed. That bad decision of mine does not negate the responsibility of these agencies set up to help disabled children. I'm sorry I'm not 2 people. I'm one mom, who has given up any shred of a normal life in hopes that her kids may have one someday, and it sucks when I'm beaten down at every step by the agencies who were designed to help just those kinds of kids. And no amount of positive thinking is going to change a damn thing.
June 7, 2011
Update: It wasn't RCOC. My gods, it was ACES. The behavioral group who has worked with us for years... talk about a feeling of betrayal. Been dealing with these feelings for a while now - since finding out it was ACES who reported us, I went first from feeling betrayed, to wondering if this group who has worked with us for years thinks I'm a crappy enough mom to report me, then maybe I AM a crappy mom, to wondering why a group who has worked with us for so many years still doesn't have a clue as to Mikey's proprioceptive skills & should know he was never in any danger because he can't squeeze a bottle to spray anything out in the first place.
So the group I've reported every behavioral mishap to, in hopes they can help fix the behaviors that have happened, was the one who reported the behaviors. How the hell is that supposed to help??? It's caused more issues and hasn't helped a damn thing. First of all, how am I ever supposed to trust any group out there to 'help' us, if I'm afraid to tell them what's actually going on? And so I find myself more alone than ever.
Tuesday, April 12, 2011
My crime?
Wanting a shower. After 3 days.
David has gone to Philadelphia on a historical trip with Grandma Donna for a week. Mikey is home with me. I got a shower Saturday morning before Mikey woke up. Sunday was me & Mikey all day - never a break, and by bedtime, too exhausted. Monday morning was the morning I woke up & found that Mikey had decided to be an artist by using himself & his bed as a canvas. This morning, that was it - shower was no longer optional. I guess it was my fault - I didn't check first to see if there were any open boxes of cereal (Mikey has difficulty opening the liners). Suffice it to say that when I got out of the shower, Mikey had somehow gotten the bag open: all over the kitchen. I'm still not sure if any actually landed in his bowl. Sigh.
David has gone to Philadelphia on a historical trip with Grandma Donna for a week. Mikey is home with me. I got a shower Saturday morning before Mikey woke up. Sunday was me & Mikey all day - never a break, and by bedtime, too exhausted. Monday morning was the morning I woke up & found that Mikey had decided to be an artist by using himself & his bed as a canvas. This morning, that was it - shower was no longer optional. I guess it was my fault - I didn't check first to see if there were any open boxes of cereal (Mikey has difficulty opening the liners). Suffice it to say that when I got out of the shower, Mikey had somehow gotten the bag open: all over the kitchen. I'm still not sure if any actually landed in his bowl. Sigh.
Saturday, April 2, 2011
I'm Lost
I've lost myself. In trying to make an environment that is calm for my boys, I've lost the things I used to love to do. Mostly due to Mikey's issues (I'm assuming they're sensory, but maybe he just doesn't like my stuff), I've stopped playing my own music, whether cds or the radio (certain songs set him off), stopped playing my guitar (although he loves listening to his music, he will scream if anyone plays the acoustic guitar), I don't watch any tv programs I like in the living room, again because you never know which ones or what part will set Mikey off, and frankly, for the past 14 years, a non-screaming Mikey has always been worth it. Those are just a few examples.
But 14 years have passed, and I'm just starting to realize I have given up just about everything that was me so that they can be them. All my artistic endeavors are relegated to the studio outside, which I can't access when Mikey is around (just what I need - a kid with permanently tie dyed skin). I have my books, but try to concentrate on the page you're reading while Mikey is engaging in his endless nonsensical monologue. I've lived my life in bits and spurts for the past 14 years, and I don't know who I am anymore. When I get some free time, a few hours on a Saturday afternoon, I have no idea what I even want to do - I hate starting anything, for fear I won't have time to finish it. I know I'm lost, but I have absolutely no idea how to find myself again.
But 14 years have passed, and I'm just starting to realize I have given up just about everything that was me so that they can be them. All my artistic endeavors are relegated to the studio outside, which I can't access when Mikey is around (just what I need - a kid with permanently tie dyed skin). I have my books, but try to concentrate on the page you're reading while Mikey is engaging in his endless nonsensical monologue. I've lived my life in bits and spurts for the past 14 years, and I don't know who I am anymore. When I get some free time, a few hours on a Saturday afternoon, I have no idea what I even want to do - I hate starting anything, for fear I won't have time to finish it. I know I'm lost, but I have absolutely no idea how to find myself again.
Sunday, February 27, 2011
Dilemma: Facebook (& the internet in general) is my link to people & real life, since I cannot get out & do many of the things typical folks without rampant autism in their families can do. Without it, I would be even more isolated than I already am. The problem is that every time I get online, I am faced with friends' well meaning posts about how wonderful their lives are, how much fun they had going to this place or that, and how blessed they are to have the families they do. It just brings it all home how different & difficult my life is in comparison.
So do I continue to log in, to keep my link with the world but be constantly reminded how much my life sucks in comparison, or do I get offline & remain even more isolated than I am?
So do I continue to log in, to keep my link with the world but be constantly reminded how much my life sucks in comparison, or do I get offline & remain even more isolated than I am?
Saturday, February 19, 2011
Smileys
Looking back over my blog, I realized I use smileys way too much. Why? Am I trying to be funny & I want to make sure people get it? Am I trying to put people in a good mood? Am I (dramatic pause) trying to get a laugh so that people don't realize just how scared I am of my own life & therefore if they laugh & think I'm really ok, they won't be scared away?
Thursday, February 17, 2011
Lose it
I have been religiously logging in my daily calorie intake on a site called LoseIt.com. If the damn house elves would stop shrinking my pants, I wouldn't have to resort to such drastic measures. Unfortunately, I think I hate shopping for new clothes more than I hate limiting my calories. This does lead to some interesting quandries, though - at least once last week, if I was going to stay below my daily calorie limit, I had to decide between having something for dinner & having a couple glasses of wine. Guess which won out.
I suppose if I could just get more 'regular' exercise, I could expend more energy and therefore eat more (or drink more, as the case may be). Sadly, 'regular' is a word not known in this house. "Regular" would imply that I am setting aside a set number of minutes per day solely for my benefit.
I suppose if I could just get more 'regular' exercise, I could expend more energy and therefore eat more (or drink more, as the case may be). Sadly, 'regular' is a word not known in this house. "Regular" would imply that I am setting aside a set number of minutes per day solely for my benefit.
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