(Side note - the only thing can't seem to edit is the date - if I edit or find a misspelling and edit a post, it re-posts it as the current date, not the date I wrote it, which was back in February 2011. Wait - think I got it! At least the month and year; we'll see.) Nope, not fixed. deal with later.
Thank the gods for alcohol. I really mean it. The doctors tried to prescribe me various anti-depressant type drugs in the past, and they either gave me night sweats or made me grind my teeth. Well, there was one prescription that was rather nice, if I didn't have to function. It zoned me out so I felt great & didn't care what happened to anyone, so of course I couldn't take that one(damn!). The doctor told me I had 'situational depression', which is I guess what single moms raising autistic twin boys by themselves all have. No chemical imbalance - life just sucked.
One of the reasons I never blogged was because I hate it when someone is constantly bitching & complaining, & the first time I tried to blog, that's all I did - bitch & complain. Granted, I was just finishing another (the 6th) giant due process hearing with the school district & was in settlement talks regarding homeschooling for my other child, but still - I looked back on it & thought, "Who in the hell would want to read about that?" There's nothing redeeming, no actual lessons to be learned except "stay the hell away from the blog (and possibly the school district) at all costs!" Bummer city.
My free time is extremely limited - if I'm going to read some blogs, I either want to gain some useful information, be inspired, or just get a good laugh. I don't want to listen to someone whine about how their life is so much more horrible than everyone elses. That being the case, I didn't want to inflict my complaining on the blogosphere. Hence, I just didn't blog (does that mean I was bitching & complaining that whole time? I'm not going there...) :-)
Sunday, August 26, 2012
Anxiety - mine
1. Michael. When he has a temper meltdown, he has now started going for the windows. We have had one broken window so far. Amazingly, he did not hurt himself.
2. David. Although in general, he is doing very well, he occasionally has meltdowns and outbursts, but not so often that they're trackable enough for Regional Center to give us any behavioral help. So we have been referred to the Orange County Mental Health people. They gave me 5 different groups to contact. Most of these groups specialize in aggressive children from drug addled or adoptive families. The one place we are going to wasn't even sure they would take David with a diagnosis of autism. David tends to overreact to most things, and one of my biggest fears is a Kelly Thomas like confrontation with the police because of overreaction.
3. Both boys are 16 now, and David is 6' tall and 200 lbs. Mikey is almost 6'2" and 180 lbs. If either boy were to defy me in public, I could not physically make them behave.
4. This is the age that the schools start transition programs. Since Mikey goes to a special school, they have a transition program all set up for him. Since David goes to a private school (our legally filed homeschool), I can't seem to get an answer from the Regional Center as to how they handle this. They tell me they do nothing until the child is 22, because the school is supposed to handle the transition. I asked about other kids with IEPs in private schools, whether they be religious or otherwise - I', sure I'm not the only parent to have little faith in their school system, but private schools are not part of the districts. I told our worker I want it in writing what they do to accommodate kids in private school - not just "someone said we don't do anything till 22". David is very bright academically - his CHEP teacher said he could probably pass the California High School Exit Exam back when he was in 8th grade. He is on track to graduate at 18, and is currently taking a college math class for credit through ALEKS. I told my worker that this is a child that if they actually do the right thing for him, may NOT be a Regional Center client for the rest of his life, but if they wait 5 years to give him any sort of job skills or training (social skills being his weakest point), they very well may have him on their books for life.
5. We just got a letter saying we have a new IHSS worker. My job is In Home Support Services, taking care of my boys, because no one else wants to do what I do for slightly over minimum wage, and the boys are under protective supervision because of Mikey's eloping, and Davids past tendency to get scared and run off. He's made progress on this, but again, like the anger issues, it can be sporadic and he needs to be watched. The old worker was with us for 4 or 5 years and saw this. A new worker could come in, speak to David, think he's doing just fine, and cut him from the program. There goes half my income.
6. If Michael's aggression gets too difficult to physically handle, he may have to go into some kind of assisted living situation, whether this be in 3 months or 3 years. My first fear about this is that for as many 'autistic behaviors' he has, he is extremely bright. I don't want him in a place where they will try to drug him into compliance. My second fear about this is if he's no longer living with me, I no longer get IHSS income for taking care of him. There goes the 2nd half of my income.
I have done IHSS for my kids for the past 10 years at least. This is the only current marketable job skill I have, and there is no way in hell I will do this for other peoples children for minimum wage - it probably would put me right over the edge.
7. Which brings me to #7 - can you imagine trying to break into the job market, with no current up to date skills, past the age of 50? I'm 49 now. IHSS has a rule that if you're working for your own kids, you can't contribute to social security. So, social security considers me as having not worked for the past 10 years and I don't have enough work credits to ever retire.
8. I can't really speak to this until my orthopedists visit tomorrow, but in February 2011, I developed a nasty case of tennis elbow after trying to cut down all the monster Bougainvillea that tends to cover our house when neglected. It was so bad I could not move my arm to brush my teeth or hair. Cortisone shots lasted for 2 months, but you can only get one every 3 or 4 months. I did OT for a while, and it got better - I had no pain as long as I didn't do anything with my arm. It was feeling pretty good, so one day I did about 5 minutes of crochet sitting in the car waiting for David, and the next day my arm was out of whack again. After 5 minutes. Finally decided to try an experimental but approved procedure called PRP, or Platelet-rich plasma, where they take out your blood, put it in a centrifuge till only the good rich stuff is there and then they stick it back in your arm. I did this twice, and had no success. I am still babying my arm, wearing my arm band and wrist brace, but now, even when I baby it, from the always popular pain level of 1 to 10, when I am doing absolutely nothing, the pain sits at a 2. If I try to take a plate out of the cupboard (a lightweight Corelle plate, which I had to switch to, by the way), the pain will shoot up to a 5. Writing my name has become painful - I'm doing a lot more online things lately, because I can wear my wrist brace and still type. This is my right arm - did I tell you I'm right handed? Also, I have a Masters Degree in Art - weaving and fiber arts to be specific. So far, I have not found one art media that I trained for and brought me joy that does not now bring me pain. Maybe that should be #9, but until I speak to the orthopedist about possibilities, I can't go there yet. All I know is it's depressing to look inside the doors of my studio, and I may be having one massive art supplies sale in the future.
9. When the boys turn 17, I have to start the process of becoming their conservator, so that places like Regional Center can't decide to stick them somewhere totally unsuitable.
10. When the boys turn 18, I have to apply for SSI for them. This also means I would be their representative payee and keep all their bankbooks and pay their bills and keep track of their money, as well as my own. More time, more paperwork, more more more......
11. AND, according to my divorce decree, if the boys turn 18 and a doctor determines that their autism will keep them from holding down a job (definitely in Mikey's case), my ex will have to continuing paying child support. For life. Now, as his girlfriend is already paying his child support for him, and that his arrears are now up to almost $120,000, I just don't see this happening.
12. And believe it or not, this is the one that really ticks me off. I was being sued by a past school aide of Mikeys who claimed I was responsible for his outburst on the class outing because I didn't send money for the outing but sent him a lunch instead. Regardless that depositions stated that he was allowed to participate in the outing; the aides just tried to get him to eat his sandwich before he got to eat pizza. She was supposedly hurt by Mikey, and has some kind of chronic pain condition, although it does not prohibit her from getting a full time job with benefits with the city of ___. Regardless that this woman received workman's comp for her injury, regardless that all her medical bills were paid, she wanted more. $300,000 more to be exact. Luckily I had renters insurance that hired a lawyer for me, because there's no way I could have afforded one on my own. Long story short, although if we went to court, we could have won and made great case law like they have in New York, that says if you take a job and know the risks, you can't later sue if you sustain damage from those known risks. But because it was an insurance company, they made her an offer of $30,000, and they took it. They didn't want to go to court - they'd lose their butts. At least this woman has to pay a good chunk back to workman's comp, and pay her lawyer, too, so I'll bet she'll be lucky if she comes out of this with $8,000 or so. But it was wrong. It was so very very wrong. And now my renters insurance will probably go up.
13. I have spent my whole life trying to do the right thing for my boys. I will continue to do so. But now I have started to really wonder what is to become of me.
Sunday, October 30, 2011
Teens
It's Halloween time. The teens in the homeschool group had a dance last night, and it was difficult to look at the pictures people were posting of their kids. We've recently stopped going to the homeschool park day due to social issues David had been having with the kids. The teen years are difficult enough; for teens with autism/aspergers, they can be truly horrifying.
David is now in David is now in a Social Skills group where I'm hoping he can learn some social skills & defenses before we go back to park day. He mentioned missing park day the other day: I asked him what he missed. He said he missed seeing his "true" friends. I asked him to name those friends, and he named off most of the park day teens - a good 10 or 15 people. Then I asked him to name those kids who were still in contact with him; those that called or e-mailed him. He came up with 3 names: one who doesn't even attend park day anymore (except for holidays) due to returning to public school, and one who comes to park day sporadically but attends another class with him. The last one attends park fairly regularly, and also e-mails him, but doesn't really hang out with him at park anymore. These are the nice ones.
As for the other 'true' friends, one girl, who he really enjoys talking with, intentionally gave him the wrong e-mail address, twice. One lied & said she didn't e-mail or Facebook, yet I see her on Facebook with others. One boy intentionally eggs him on to get a reaction, whether it's outrageous statements that freak him out, or telling him to draw pornographic comics. These are his 'true' friends. Before we stopped going to park day, the best I could hope for was that they would ignore him.
What really gets me is that for the most part, these are the kids that, if they were in public school, would be the ones ostracized & picked on for their weirdness & behaviors, but because they have banded together in a different environment, they are the ones doing the picking.
I tried talking to some of the moms previously. Unfortunately, most of them are oblivious to their kids behaviors when out of sight. One mom swears that her child has actively tried to include David in things, because her child told her that, yet I have a photograph of that child sitting next to my son, leaning away from him & ignoring him as David tries to engage him in conversation. One time we went to the mall with a group of teens, and maybe it was a coincidence, but at the same moment that David sat down with the teens, they got up as a whole (about 10 - 15 of them) and left to go do various things, leaving David alone at the table.
I was sitting with the moms at the opposite table, who also observed this, and the moms rationalized this with, "Oh, they just didn't notice him" (my son is 6 feet tall and 190 lbs and one of the least 'unnoticeable' person around), and "They were just busy with their own stuff; they didn't mean anything by it," (really? Not one person in a group of 10-15 kids noticed they were leaving a solitary kid alone at the table?) and they finished with "Why doesn't David go over to that other table of boys & join them?" (There was a separate table with 3 boys at it). I got up and said, "Why? So he can be rejected again?" and retrieved my dejected son & left.
Now I know my son is not the easiest person to hang around with. He has autism. He fixates on certain favored topics of conversation long past it's expiration date. He doesn't know how to join in a topic he's unfamiliar or uninterested in. But he is kind. He is a sweet kid who would never intentionally hurt anyone; wouldn't know how to provoke a reaction from someone for his pleasure or to impress someone else, and doesn't have the social skills to lie to fit in. He just doesn't have the social skills to deal with the precarious nature of relationships in the teen years.
As mothers, it is our job to raise our children and guide them into becoming reasonable human beings. Some of the moms seem to have a theory that they should let their kids work out their conflicts on their own. In theory, I see their reasoning behind this, but in reality, situations where children who parent themselves without guidance from adults turn into scenes from "Lord of the Flies". As parents, we need to guide our children in how to treat other people. Everyone who's had a toddler knows that you have to teach them to share - they are not giving by nature. Without guidance, our kids will continue to be selfish toddlers, only caring about their inner circle and how the world reacts to them. We can hope they model our good behavior, but that is not always the case.
One of the best things we can do is not be ignorant of our children's behaviors toward others. Yes, we all want to believe the best of our children, but we do them no favors by ignoring their faults. My son has social skills issues - I recognize his faults, and I have him enrolled in a special class so he can learn how to interact with others. When he overreacts, he can scare people, because he's loud & big & when frustrated, can scream like a 2 year old, which is completely socially inappropriate. I try not to rationalize his behaviors by using autism as an excuse - he needs to learn to interact with people if he's going to live in this world, and I am going to do my best to help him learn how.
What makes this difficult is when other parents try to excuse or rationalize their children's behaviors. Are they just so happy that their kids aren't in the picked on group that they don't mind if their kids are now the bullies & mean kids? Are they really that oblivious to their kids behaviors? Or is it that if they recognize those behaviors in their kids, then they would have to realize they're failing at some aspect of parenting? I don't know. All I know is that it is heartbreaking to watch when your child is the one who's never included and thinks of everyone as his friend when in reality, they are not.
David is now in David is now in a Social Skills group where I'm hoping he can learn some social skills & defenses before we go back to park day. He mentioned missing park day the other day: I asked him what he missed. He said he missed seeing his "true" friends. I asked him to name those friends, and he named off most of the park day teens - a good 10 or 15 people. Then I asked him to name those kids who were still in contact with him; those that called or e-mailed him. He came up with 3 names: one who doesn't even attend park day anymore (except for holidays) due to returning to public school, and one who comes to park day sporadically but attends another class with him. The last one attends park fairly regularly, and also e-mails him, but doesn't really hang out with him at park anymore. These are the nice ones.
As for the other 'true' friends, one girl, who he really enjoys talking with, intentionally gave him the wrong e-mail address, twice. One lied & said she didn't e-mail or Facebook, yet I see her on Facebook with others. One boy intentionally eggs him on to get a reaction, whether it's outrageous statements that freak him out, or telling him to draw pornographic comics. These are his 'true' friends. Before we stopped going to park day, the best I could hope for was that they would ignore him.
What really gets me is that for the most part, these are the kids that, if they were in public school, would be the ones ostracized & picked on for their weirdness & behaviors, but because they have banded together in a different environment, they are the ones doing the picking.
I tried talking to some of the moms previously. Unfortunately, most of them are oblivious to their kids behaviors when out of sight. One mom swears that her child has actively tried to include David in things, because her child told her that, yet I have a photograph of that child sitting next to my son, leaning away from him & ignoring him as David tries to engage him in conversation. One time we went to the mall with a group of teens, and maybe it was a coincidence, but at the same moment that David sat down with the teens, they got up as a whole (about 10 - 15 of them) and left to go do various things, leaving David alone at the table.
I was sitting with the moms at the opposite table, who also observed this, and the moms rationalized this with, "Oh, they just didn't notice him" (my son is 6 feet tall and 190 lbs and one of the least 'unnoticeable' person around), and "They were just busy with their own stuff; they didn't mean anything by it," (really? Not one person in a group of 10-15 kids noticed they were leaving a solitary kid alone at the table?) and they finished with "Why doesn't David go over to that other table of boys & join them?" (There was a separate table with 3 boys at it). I got up and said, "Why? So he can be rejected again?" and retrieved my dejected son & left.
Now I know my son is not the easiest person to hang around with. He has autism. He fixates on certain favored topics of conversation long past it's expiration date. He doesn't know how to join in a topic he's unfamiliar or uninterested in. But he is kind. He is a sweet kid who would never intentionally hurt anyone; wouldn't know how to provoke a reaction from someone for his pleasure or to impress someone else, and doesn't have the social skills to lie to fit in. He just doesn't have the social skills to deal with the precarious nature of relationships in the teen years.
As mothers, it is our job to raise our children and guide them into becoming reasonable human beings. Some of the moms seem to have a theory that they should let their kids work out their conflicts on their own. In theory, I see their reasoning behind this, but in reality, situations where children who parent themselves without guidance from adults turn into scenes from "Lord of the Flies". As parents, we need to guide our children in how to treat other people. Everyone who's had a toddler knows that you have to teach them to share - they are not giving by nature. Without guidance, our kids will continue to be selfish toddlers, only caring about their inner circle and how the world reacts to them. We can hope they model our good behavior, but that is not always the case.
One of the best things we can do is not be ignorant of our children's behaviors toward others. Yes, we all want to believe the best of our children, but we do them no favors by ignoring their faults. My son has social skills issues - I recognize his faults, and I have him enrolled in a special class so he can learn how to interact with others. When he overreacts, he can scare people, because he's loud & big & when frustrated, can scream like a 2 year old, which is completely socially inappropriate. I try not to rationalize his behaviors by using autism as an excuse - he needs to learn to interact with people if he's going to live in this world, and I am going to do my best to help him learn how.
What makes this difficult is when other parents try to excuse or rationalize their children's behaviors. Are they just so happy that their kids aren't in the picked on group that they don't mind if their kids are now the bullies & mean kids? Are they really that oblivious to their kids behaviors? Or is it that if they recognize those behaviors in their kids, then they would have to realize they're failing at some aspect of parenting? I don't know. All I know is that it is heartbreaking to watch when your child is the one who's never included and thinks of everyone as his friend when in reality, they are not.
Wednesday, July 20, 2011
Down
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.
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.
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.
Wednesday, February 16, 2011
Drained
Been dealing with appointments lately - doctor, dentist, eye doctor, podiatrist, orthopedist, autism specialist... mostly for the boys, although I admit to a dentist & eye appointment in there, too. The boys both have been diagnosed with flat feet and need orthodics; seems I have flat feet too, and never knew it, & could use the orthodics, too. The doctor asked if I didn't get sore backs & legs after walking - I told him yes, but I figured I was just getting old. :-)
Did I mention all of these appointments have been within the past couple weeks, and we still have a few more to go? I thought I was being sensible by scheduling them all at once; you know, get them over with & all. Only problem is I am completely exhausted & trying to stay positive that I will have enough energy to make it to the last appointment.
One of the worst parts about raising my two teenage autistic sons by myself is that I am so completely drained all the time. I have no extra energy for the boys, let alone myself, by the time dinner rolls around. I have so many projects I'd like to start; weavings, costuming, tie dye, jewelry, but I just don't have the energy left to do anything. By the time they're in bed, I'm collapsing as well. I miss being creative. People will say, "Make the time!" I would love to have them come live my life for a week & then would love to hear where they would 'make the time'.
Did I mention all of these appointments have been within the past couple weeks, and we still have a few more to go? I thought I was being sensible by scheduling them all at once; you know, get them over with & all. Only problem is I am completely exhausted & trying to stay positive that I will have enough energy to make it to the last appointment.
One of the worst parts about raising my two teenage autistic sons by myself is that I am so completely drained all the time. I have no extra energy for the boys, let alone myself, by the time dinner rolls around. I have so many projects I'd like to start; weavings, costuming, tie dye, jewelry, but I just don't have the energy left to do anything. By the time they're in bed, I'm collapsing as well. I miss being creative. People will say, "Make the time!" I would love to have them come live my life for a week & then would love to hear where they would 'make the time'.
Thursday, February 10, 2011
House Rules
We're reading this book for our book club. It was my suggestion. I hadn't read it; someone had suggested it to me because it's about a single mom with an Asperger's son who gets accused of murder, and I'm a single mom with an Aspie son as well as one on the low functioning end of the Autism scale. We were looking for suggestions of what to read for the month, so I threw this one out there & they all agreed.
I'm really regretting it now. I'm about halfway through the book, and I honestly don't know if I can finish it. Difficult barely begins to describe how it is to read this book; to go through all the things this mom goes through; basically, I'm living all the crappy parts of my life all over again. Every raw emotion; every doubt for the future.... it just hits home way too close. I can't even write any more on this post.
I'm really regretting it now. I'm about halfway through the book, and I honestly don't know if I can finish it. Difficult barely begins to describe how it is to read this book; to go through all the things this mom goes through; basically, I'm living all the crappy parts of my life all over again. Every raw emotion; every doubt for the future.... it just hits home way too close. I can't even write any more on this post.
Tuesday, January 4, 2011
The Holidays
I don't even know where to start on this. Our holidays were both wonderful & horrible. I am extremely blessed to have a wonderful bunch of friends who accept my boys and their disability & don't freak out when they do something 'autistic'.
Let me back up a bit. A few years ago, I started a new tradition of having an open house & tamale making day on Christmas Eve, because it was just too stressful & overstimulating for the boys to go to other houses. It had once been suggested, after a crazy Christmas Eve at my mom's, that perhaps it would be better if we came later & left early. This suggestion could have simply been well meaning, but I realized that they were suggesting that I accommodate a group of neurotypical adults. Why were they not trying to accommodate the children with a disability? I figured if I had an open house, people could come celebrate with us, have some fun, make some goodies, eat some goodies, the boys would have their own environment, their own toys & stuff; everyone wins, right?
This system had some glitches; the first being one of my sisters. The first time I did this, I had some friends over when the 'family' arrived, and my sister made rude comments about why were there other people there; wasn't this supposed to be for family, etc. I was embarrassed, yet tried to smooth things over for my mom, who hates stress & wants everyone to be happy. Last year I was told that the family was coming, only to be told at the last minute they wouldn't be there at all. This year, I told mom that everyone was welcome, but there was no structure, and if friends were there, my sister would be expected to be nice. Mom said they probably wouldn't come, then. Sheesh! OH! Let me also say that my parents and one sister live about a mile away from me, but the other sisters live in Kansas & San Diego, and I don't get to see them very often. They all come to stay at mom's for Christmas.
So this year, on Christmas Eve, we had an absolutely wonderful day! Many friends came throughout the day, adults & kids of all ages, we ate & drank & made goodies & no one freaked out over anything; it was heaven. I felt loved and so did my children. There was no stress, no expectations, and no family showed up.
On Christmas Day, my boys & I opened presents & had a relaxing morning. Early in the afternoon, I took them to the other grandparents house. My ex-husband may have pulled a disappearing act & chooses to have no involvement with his kids, but his parents are wonderful with the boys and I am making sure they keep up a good relationship with them. We were all welcomed in, everyone felt comfortable, everyone was accepting and accepted.
I stayed for a few hours & then left to spend the evening with the Kelly's. This is the family of my best friend Bill, who passed away 8 years ago. They said that having me there is almost like having Bill with them again. They are a warm, loving bunch, too, and I haven't missed a Christmas visit in the past 8 years. Again, a win-win evening.
The next day, the day after Christmas, my mom called & said the family was coming over about 1:30 pm. I don't want to dwell on this - lets just say it was 2:00 before they got there and they were gone before 3:00. In fact, David looked up at one point & said, "I thought they were coming over for Christmas?" and all I could say was, "I thought so too, son." I hadn't even gotten a chance to set out any goodies before they were all taking off. My one sister even left the special picture that David had drawn just for her - good thing I found it & hid it before he saw - he would have been crushed.
One of the biggest problems with having autistic children is the isolation. Because of some of the kids' behaviors, we just can't get out & do things like other families. Hence, we end up staying home a lot. A LOT. The isolation & the loneliness can be overwhelming at times. On one side, I had a ton of wonderful friends who made all of us feel loved & special; on the other, I had my immediate family make us feel like we were an afterthought & something to be 'gotten through' so they could get back to 'their' holiday.
I did talk about it with my mom - she tried to rationalize away their behavior by saying, "They just didn't think." I said that that was the problem - I had family that didn't even think of us, but friends who made sure we weren't alone. Mom said that next year will be different. I said that it will, because we're simply not going to expect anything from the family; therefore we won't be disappointed. I am willing to subject myself to a certain amount of my family's behaviors, but I will NOT tolerate them making my children feel like an afterthought.
The end of this year has brought about a lot of big changes for me - certain long time 'friends' have disappeared from my life, whereas other friends have come to the forefront as 'real' friends. It has been a year of re-evaluation, and a lot of changes; some extremely difficult, but for the better. I guess Richard Bach was right - in his book "Illusions", he writes, "The bond that links your true family is not one of blood, but of respect and joy in each other's life. Rarely do members of one family grow up under the same roof."
Oh, and a last minute thought on the isolation: Just because we know we won't be able to come to your holiday parties doesn't mean we wouldn't like to be invited anyway. Sometimes it IS the thought that counts.
Let me back up a bit. A few years ago, I started a new tradition of having an open house & tamale making day on Christmas Eve, because it was just too stressful & overstimulating for the boys to go to other houses. It had once been suggested, after a crazy Christmas Eve at my mom's, that perhaps it would be better if we came later & left early. This suggestion could have simply been well meaning, but I realized that they were suggesting that I accommodate a group of neurotypical adults. Why were they not trying to accommodate the children with a disability? I figured if I had an open house, people could come celebrate with us, have some fun, make some goodies, eat some goodies, the boys would have their own environment, their own toys & stuff; everyone wins, right?
This system had some glitches; the first being one of my sisters. The first time I did this, I had some friends over when the 'family' arrived, and my sister made rude comments about why were there other people there; wasn't this supposed to be for family, etc. I was embarrassed, yet tried to smooth things over for my mom, who hates stress & wants everyone to be happy. Last year I was told that the family was coming, only to be told at the last minute they wouldn't be there at all. This year, I told mom that everyone was welcome, but there was no structure, and if friends were there, my sister would be expected to be nice. Mom said they probably wouldn't come, then. Sheesh! OH! Let me also say that my parents and one sister live about a mile away from me, but the other sisters live in Kansas & San Diego, and I don't get to see them very often. They all come to stay at mom's for Christmas.
So this year, on Christmas Eve, we had an absolutely wonderful day! Many friends came throughout the day, adults & kids of all ages, we ate & drank & made goodies & no one freaked out over anything; it was heaven. I felt loved and so did my children. There was no stress, no expectations, and no family showed up.
On Christmas Day, my boys & I opened presents & had a relaxing morning. Early in the afternoon, I took them to the other grandparents house. My ex-husband may have pulled a disappearing act & chooses to have no involvement with his kids, but his parents are wonderful with the boys and I am making sure they keep up a good relationship with them. We were all welcomed in, everyone felt comfortable, everyone was accepting and accepted.
I stayed for a few hours & then left to spend the evening with the Kelly's. This is the family of my best friend Bill, who passed away 8 years ago. They said that having me there is almost like having Bill with them again. They are a warm, loving bunch, too, and I haven't missed a Christmas visit in the past 8 years. Again, a win-win evening.
The next day, the day after Christmas, my mom called & said the family was coming over about 1:30 pm. I don't want to dwell on this - lets just say it was 2:00 before they got there and they were gone before 3:00. In fact, David looked up at one point & said, "I thought they were coming over for Christmas?" and all I could say was, "I thought so too, son." I hadn't even gotten a chance to set out any goodies before they were all taking off. My one sister even left the special picture that David had drawn just for her - good thing I found it & hid it before he saw - he would have been crushed.
One of the biggest problems with having autistic children is the isolation. Because of some of the kids' behaviors, we just can't get out & do things like other families. Hence, we end up staying home a lot. A LOT. The isolation & the loneliness can be overwhelming at times. On one side, I had a ton of wonderful friends who made all of us feel loved & special; on the other, I had my immediate family make us feel like we were an afterthought & something to be 'gotten through' so they could get back to 'their' holiday.
I did talk about it with my mom - she tried to rationalize away their behavior by saying, "They just didn't think." I said that that was the problem - I had family that didn't even think of us, but friends who made sure we weren't alone. Mom said that next year will be different. I said that it will, because we're simply not going to expect anything from the family; therefore we won't be disappointed. I am willing to subject myself to a certain amount of my family's behaviors, but I will NOT tolerate them making my children feel like an afterthought.
The end of this year has brought about a lot of big changes for me - certain long time 'friends' have disappeared from my life, whereas other friends have come to the forefront as 'real' friends. It has been a year of re-evaluation, and a lot of changes; some extremely difficult, but for the better. I guess Richard Bach was right - in his book "Illusions", he writes, "The bond that links your true family is not one of blood, but of respect and joy in each other's life. Rarely do members of one family grow up under the same roof."
Oh, and a last minute thought on the isolation: Just because we know we won't be able to come to your holiday parties doesn't mean we wouldn't like to be invited anyway. Sometimes it IS the thought that counts.
Tuesday, December 14, 2010
My Amazing Son
I was wrapping presents last night, and realized that for the first time ever, I had more presents for Mikey than David. This is an anomaly because, well, to keep it super simple - David is verbal and Mikey is not so much. David has always been able to tell me what he wants, and has even been known to make elaborate and detailed lists. Mikey is quite the enigma - if you can get him to tell you what he wants, he may not want it anymore by the time Christmas rolls around. This being the case, if there's something I'm sure Mikey likes and will continue to like (for example, Disney Villains), I will grab the cheapo coloring book of Disney Villains when I see it in August & stash it away till Christmas.
I guess I'd been doing that quite a lot, because I had all sorts of bits & bobs for Mikey, yet only a couple things for David. So I go the direct route & ask David what he would like for Christmas, since he hadn't made a list. He says, "Oh, I don't really want anything - I have so much already. Maybe something handmade." GASP! This came from a 14 year old boy? My son is simply amazing, and now I want to give him the world.
I guess I'd been doing that quite a lot, because I had all sorts of bits & bobs for Mikey, yet only a couple things for David. So I go the direct route & ask David what he would like for Christmas, since he hadn't made a list. He says, "Oh, I don't really want anything - I have so much already. Maybe something handmade." GASP! This came from a 14 year old boy? My son is simply amazing, and now I want to give him the world.
Sunday, December 12, 2010
Sleep
I've been trying to tell myself that I will wake up later in the mornings; allow myself to get a full night's sleep for a change, but long standing patterns are hard to break. Being the sole caretaker of my special needs kids, I am the only responsible one. If I didn't get them up & ready for school, they would not have gone. If I wasn't acutely aware of the bumps in the night, the boys might have gotten into something that I'd neglected to childproof; worse yet, Mikey could have escaped. The things that typical kids get into is not the same as autistic kids - there is a whole level of danger that these kids don't seem to sense.
Anyway, my current sleep pattern has emerged from years of having to follow the same routine, and a little bit of personal habit, too. It goes like this: at 8:00 pm, Mikey declares it is bedtime. He is nothing if not a creature of routine, and he insists on heading to bed at 8:00 every night. I am totally ok with this - by 8 pm, I am usually exhausted & ready to fall into bed myself. Now, just because Mikey demands to head to bed does not mean he is ready to sleep. Also, now that he's 14, David is becoming the stereotypical teen who wants to stay up late & sleep in. This would be ok with me if he could do it quietly. Unfortunately, he does nothing quietly.
Falling asleep is not a problem for me; staying asleep is. If I fall asleep right away, chances are that either Mikey will be talking to himself or thumping around in the room on my right and I'll wake up, or David will wake me when he thumps down the hallway to the bathroom or to his room. If I can manage to get back to sleep after this, I often wake up with thoughts of worry about things I have to get done or things I may have forgotten; again, when all the responsibility is mine, if I forget something, I don't have a backup. And after all this, when I manage to sleep again, I tend to naturally wake at 5:30 am, just because that's when the boys got up when they were smaller, and Mikey still does sometimes. 5:30 isn't too bad, but when we shift from Daylight Savings Time back to normal time, I am then waking at 4:30 am, and that isn't acceptable. THIS is what bugs me - no matter if I know I can sleep in, my body won't let me. If I stay up on the rare occasions I can have friends over, I still wake at the same time, whether I went to bed at 8 pm or 2 am. This is one area where my new found positive thinking has thus far failed me. How does one train oneself into a new sleep pattern? If you know, please fill me in - I could use the sleep. :-)
Anyway, my current sleep pattern has emerged from years of having to follow the same routine, and a little bit of personal habit, too. It goes like this: at 8:00 pm, Mikey declares it is bedtime. He is nothing if not a creature of routine, and he insists on heading to bed at 8:00 every night. I am totally ok with this - by 8 pm, I am usually exhausted & ready to fall into bed myself. Now, just because Mikey demands to head to bed does not mean he is ready to sleep. Also, now that he's 14, David is becoming the stereotypical teen who wants to stay up late & sleep in. This would be ok with me if he could do it quietly. Unfortunately, he does nothing quietly.
Falling asleep is not a problem for me; staying asleep is. If I fall asleep right away, chances are that either Mikey will be talking to himself or thumping around in the room on my right and I'll wake up, or David will wake me when he thumps down the hallway to the bathroom or to his room. If I can manage to get back to sleep after this, I often wake up with thoughts of worry about things I have to get done or things I may have forgotten; again, when all the responsibility is mine, if I forget something, I don't have a backup. And after all this, when I manage to sleep again, I tend to naturally wake at 5:30 am, just because that's when the boys got up when they were smaller, and Mikey still does sometimes. 5:30 isn't too bad, but when we shift from Daylight Savings Time back to normal time, I am then waking at 4:30 am, and that isn't acceptable. THIS is what bugs me - no matter if I know I can sleep in, my body won't let me. If I stay up on the rare occasions I can have friends over, I still wake at the same time, whether I went to bed at 8 pm or 2 am. This is one area where my new found positive thinking has thus far failed me. How does one train oneself into a new sleep pattern? If you know, please fill me in - I could use the sleep. :-)
Tuesday, November 30, 2010
The Secret
I think I mentioned my friend Robert in my first post. He's the one with the incredibly positive attitude who's such a great guy. Well, he recommended a book to me called "The Secret". It's basically about the power of positive attraction; if you have negative thoughts, you attract more negative things into your life, and vice versa - if you have positive thoughts, you attract the positive.
I've never been one for self-help books. My attitude has always pretty much been "The gods help those who help themselves", and "Get up off your butt & do something... nobody's going to save your ass but you". So to believe that simply having the positive thoughts going will make your life better seems pretty simplistic & naive on the surface. I'm only about a third of the way into the book, but what I've been seeing reflected in real life is pretty darned amazing.
First, I really noticed this 'secret' in action in other people. Those people who I admire and respect; who seem to have it all together and seem genuinely happy most of the time really do have a positive attitude about things; even when things don't go their way. Those people who seem to have the world collapse in on them constantly are also the ones who are constantly bitching about how much life sucks & how unfair everything is to them. Coincidence?
Now, as to myself, I recently posted the bitch blog about dealing with the people from SSI. Shortly after this, I got a hold of the book, & decided to put this positive thinking more into practice - to really try to keep my thoughts positive & be the master of my own thoughts. Amazingly enough, my fears did not come into play, I did not have to hire an attorney, I still owe some back money, but not nearly the massive amount I originally thought, and the issue will be resolved once & for all & I don't have to deal with that agency & their incompetence & negativity again. I've put it behind me and moved on to the positive. I'm resolving the MediCal issue, the transition is going smoothly, and I'm sure it will all work out, too. So.... wow! Again, coincidence?
Sometimes it's not so easy to let go of the negative, though - especially when it comes in the shape of friends you've been friends with for years. I'd been friends with a person for over 20 years, or so I thought. This person was one of the negative ones - rarely did she ever call with anything positive, but if something horrid happened, she'd be looking me up. She did have an amazing amount of crappy things happen to her, and things just kept getting worse. I tried to be there for her through troubled times, but I don't think she really wanted my help or friendship - I think she was happy being unhappy. When she started drinking extremely heavily, I tried talking to her about it, and it almost killed the friendship right there. We remained peripheral friends after, until recently. She took offense to a Facebook topic and although I apologized if I offended her, tried to explain that what she read into it was not what I meant, it didn't matter - a few days later, she "unfriended" me on Facebook. Talk about shock & awe - what brought this on? How could she? My gods, over 20 years, did she not see how I'd been there for her through all the crap again & again, & now she drops me because of a post? I really worried about this for a while, till I put some serious thought into it. Maybe it was the law of attraction at work, helping me get rid of the negative in my life. What I thought of as a friendship was actually pretty one sided for a lot of those years - not all, but a lot. It made me question my judgment - how could I have been so blind and wasted all that time, etc - but it wasn't wasted time - it was, like most things in life, an opportunity for growth and learning, and I needed to learn, grow, and move on. Just because something is positive doesn't make it easy.
I then started thinking of all the truly wonderful people I have in my life, and realized these are the people who have been there for me, as I have for them. We rejoice in each others happiness & lend a hand when help is needed. We laugh and cry with each other; support and encourage each other. Positive really does attract positive. I'm so thankful for all the wonderful friends I have in my life, and I look forward to finishing the book & seeing what wonderfully positive things continue to manifest.
later the same evening
Just got a call confirming the boys MediCal will be continued with no interruption, and that if they have any questions when they re-authorize in January, they'll call us then. Good things all around!!!
I've never been one for self-help books. My attitude has always pretty much been "The gods help those who help themselves", and "Get up off your butt & do something... nobody's going to save your ass but you". So to believe that simply having the positive thoughts going will make your life better seems pretty simplistic & naive on the surface. I'm only about a third of the way into the book, but what I've been seeing reflected in real life is pretty darned amazing.
First, I really noticed this 'secret' in action in other people. Those people who I admire and respect; who seem to have it all together and seem genuinely happy most of the time really do have a positive attitude about things; even when things don't go their way. Those people who seem to have the world collapse in on them constantly are also the ones who are constantly bitching about how much life sucks & how unfair everything is to them. Coincidence?
Now, as to myself, I recently posted the bitch blog about dealing with the people from SSI. Shortly after this, I got a hold of the book, & decided to put this positive thinking more into practice - to really try to keep my thoughts positive & be the master of my own thoughts. Amazingly enough, my fears did not come into play, I did not have to hire an attorney, I still owe some back money, but not nearly the massive amount I originally thought, and the issue will be resolved once & for all & I don't have to deal with that agency & their incompetence & negativity again. I've put it behind me and moved on to the positive. I'm resolving the MediCal issue, the transition is going smoothly, and I'm sure it will all work out, too. So.... wow! Again, coincidence?
Sometimes it's not so easy to let go of the negative, though - especially when it comes in the shape of friends you've been friends with for years. I'd been friends with a person for over 20 years, or so I thought. This person was one of the negative ones - rarely did she ever call with anything positive, but if something horrid happened, she'd be looking me up. She did have an amazing amount of crappy things happen to her, and things just kept getting worse. I tried to be there for her through troubled times, but I don't think she really wanted my help or friendship - I think she was happy being unhappy. When she started drinking extremely heavily, I tried talking to her about it, and it almost killed the friendship right there. We remained peripheral friends after, until recently. She took offense to a Facebook topic and although I apologized if I offended her, tried to explain that what she read into it was not what I meant, it didn't matter - a few days later, she "unfriended" me on Facebook. Talk about shock & awe - what brought this on? How could she? My gods, over 20 years, did she not see how I'd been there for her through all the crap again & again, & now she drops me because of a post? I really worried about this for a while, till I put some serious thought into it. Maybe it was the law of attraction at work, helping me get rid of the negative in my life. What I thought of as a friendship was actually pretty one sided for a lot of those years - not all, but a lot. It made me question my judgment - how could I have been so blind and wasted all that time, etc - but it wasn't wasted time - it was, like most things in life, an opportunity for growth and learning, and I needed to learn, grow, and move on. Just because something is positive doesn't make it easy.
I then started thinking of all the truly wonderful people I have in my life, and realized these are the people who have been there for me, as I have for them. We rejoice in each others happiness & lend a hand when help is needed. We laugh and cry with each other; support and encourage each other. Positive really does attract positive. I'm so thankful for all the wonderful friends I have in my life, and I look forward to finishing the book & seeing what wonderfully positive things continue to manifest.
later the same evening
Just got a call confirming the boys MediCal will be continued with no interruption, and that if they have any questions when they re-authorize in January, they'll call us then. Good things all around!!!
Monday, November 29, 2010
Dating
I don't do it. Really. Why do people find it so hard to believe that I don't have a desire to date? I've been married once - gods, that was enough. If Prince Charming rang my doorbell tonight, I'd want to see a copy of his credit report and statements from his friends & exes, not to mention a note from his mother before letting him set a foot inside (I've discovered that most men who still have issues with their mothers at this age should be run away from, very quickly).
I'm a single mom, and have been for a long time. Hell, one could even say I was a single mom while I was married - or at least that I had another child. I've been doing it on my own for so long, I don't need someone to help me take care of things. And I'm ok with that. The big question is; why does no one else seem ok with that? It's usually my married friends who want to fix me up or tell me they know someone who would be great for me. Do they just want me to suffer, too? :-) I like the closet space, sleeping when I want to, and I've trained my boys to put the seat down.
All kidding aside, I just don't have time for it. I have 2 autistic teenage boys. They take up a LOT of time. They also come first. Anyone knows, relationships take up a lot of time. Also, people in relationships want to feel like they're the most important thing in the relationship, and I just don't have that to give. It wouldn't be fair to anyone.
Ok, I wrote those previous three paragraphs back in early September. Then I went to Sasha's Halloween Yoga extravaganza where Laurel did a card reading for me, and my whole world went crashing down. She had the gall to tell me I needed to let go of my bitterness & open up. Well hell! I was damn good about rationalizing my feelings away & not dealing with the crap that's built up. I was an expert. Nothing pisses me off more than someone seeing through me. Guess I have some work to do. :-)
I'm a single mom, and have been for a long time. Hell, one could even say I was a single mom while I was married - or at least that I had another child. I've been doing it on my own for so long, I don't need someone to help me take care of things. And I'm ok with that. The big question is; why does no one else seem ok with that? It's usually my married friends who want to fix me up or tell me they know someone who would be great for me. Do they just want me to suffer, too? :-) I like the closet space, sleeping when I want to, and I've trained my boys to put the seat down.
All kidding aside, I just don't have time for it. I have 2 autistic teenage boys. They take up a LOT of time. They also come first. Anyone knows, relationships take up a lot of time. Also, people in relationships want to feel like they're the most important thing in the relationship, and I just don't have that to give. It wouldn't be fair to anyone.
Ok, I wrote those previous three paragraphs back in early September. Then I went to Sasha's Halloween Yoga extravaganza where Laurel did a card reading for me, and my whole world went crashing down. She had the gall to tell me I needed to let go of my bitterness & open up. Well hell! I was damn good about rationalizing my feelings away & not dealing with the crap that's built up. I was an expert. Nothing pisses me off more than someone seeing through me. Guess I have some work to do. :-)
Tuesday, November 9, 2010
So much for positive thinking...
Ok, it was a really sucky day & I just have to bitch, but I don't want to bitch on Facebook, because I'm really disgusted with everyone who bitches all the time & I don't want to be one of them. So I bitch on a blog - makes sense? Well, ever since my first post & I actually got one follower, I've failed to actually publish any of my following posts, so I guess it's still pretty un-public bitching. My one follower is so cool and a person I admire so much, I really hate to bitch to her. I'd rather do jello shots with her & just have a good time. I love her family, too, by the way. It's hard to bitch to people you actually like & enjoy spending time with. :-)
Ok, on to the bitching. I had my annual review for the boys' SSI today, phone interview. We have yet another new person on the case - seems like there's a new person every year. Anyway, early on, about 10 years ago, SSI kept losing my original documents, and when I gave them permission to get the documents electronically, they again lost the bloody documents. Ergo, I rescinded my permission for them to contact my financial institutions due to their incompetence and agreed to deliver all original documents to the office where I would wait for them to make copies and then take my originals home. Still not an ideal situation to me, but they were ok with it. Well, this new worker claims that 5 years ago, they made it required for me to give permission for them to get all documents electronically or else the kids would be denied their SSI claim. When I mentioned that if it happened 5 years ago, why have they let me keep doing it this way, and was told they'd made a lot of mistakes - including a past worker informing me it was ok for me to have an IRA for retirement. This new lady tells me it's only ok for me to have an IRA if it's through my employer; not if I got it on my own. I tell her look, I never would have gotten one if your worker hadn't told me it was ok. She says it doesn't matter, I need to give them all the info & give permission for them to get the documents electronically. I tell her I can't do that until I talk to my attorney. She says she'll stop the boys SSI if I don't. I tell her I'm willing to meet her on the date we picked with all documents, including the IRA documents, but I can't give permission until I talk to an attorney. She says it's pointless to keep the meeting because if I don't give permission, she's stopping the boys SSI.
Needless to say, my day was spent trying to contact referrals from my old educational attorneys for attorneys specializing in SSI & disability law, talking to Regional Center to see if my boys MediCal can be secured through RCOC without dealing with SSI (which is where they currently have their qualifications for MediCal through, and believe me, with the cost of Mikey's medications per month, I need the MediCal), trying to find out if I'll still qualify financially to be my kids IHSS provider, which is basically my whole and only source of income.
I really could care less if we continue with getting SSI at this point. Since my crappy ex is actually paying some child support at this point, and they take out $ from the SSI when this happens, it really doesn't make much difference in my income. If they stop SSI, we'll be ok financially... but my first concern is that Mikey continue to get his MediCal without interruption. My second concern is that I may be liable for paying back money I got from SSI because one of their employees who is no longer with them gave me bad advice, and that's a very real possibility, crappy though it is. I may end up paying a fortune to some attorney just to get justice, as I did to make the child support crap happen. Sigh.
You know, in the grand scheme of things, this isn't much. I don't have cancer, neither do my kids. Nobody is dying. Things could be a hell of a lot worse. But this strange sense of justice I have rails at the injustice of it all! Nobody ever told me life was fair, yet somehow I have this warped sense that it should be, and my blood pressure boils over at the unfairness when I work so hard at trying to make things work when other people I know take advantage of the system & get to skate by. Like I don't have enough to deal with, being a single mom with 2 autistic kids. I wonder what the hell did I do in my past life to have life crap on me so stupendously? Was I Atila the Hun? Perhaps a Spanish Inquisitor? Enough already!
Ok, on to the bitching. I had my annual review for the boys' SSI today, phone interview. We have yet another new person on the case - seems like there's a new person every year. Anyway, early on, about 10 years ago, SSI kept losing my original documents, and when I gave them permission to get the documents electronically, they again lost the bloody documents. Ergo, I rescinded my permission for them to contact my financial institutions due to their incompetence and agreed to deliver all original documents to the office where I would wait for them to make copies and then take my originals home. Still not an ideal situation to me, but they were ok with it. Well, this new worker claims that 5 years ago, they made it required for me to give permission for them to get all documents electronically or else the kids would be denied their SSI claim. When I mentioned that if it happened 5 years ago, why have they let me keep doing it this way, and was told they'd made a lot of mistakes - including a past worker informing me it was ok for me to have an IRA for retirement. This new lady tells me it's only ok for me to have an IRA if it's through my employer; not if I got it on my own. I tell her look, I never would have gotten one if your worker hadn't told me it was ok. She says it doesn't matter, I need to give them all the info & give permission for them to get the documents electronically. I tell her I can't do that until I talk to my attorney. She says she'll stop the boys SSI if I don't. I tell her I'm willing to meet her on the date we picked with all documents, including the IRA documents, but I can't give permission until I talk to an attorney. She says it's pointless to keep the meeting because if I don't give permission, she's stopping the boys SSI.
Needless to say, my day was spent trying to contact referrals from my old educational attorneys for attorneys specializing in SSI & disability law, talking to Regional Center to see if my boys MediCal can be secured through RCOC without dealing with SSI (which is where they currently have their qualifications for MediCal through, and believe me, with the cost of Mikey's medications per month, I need the MediCal), trying to find out if I'll still qualify financially to be my kids IHSS provider, which is basically my whole and only source of income.
I really could care less if we continue with getting SSI at this point. Since my crappy ex is actually paying some child support at this point, and they take out $ from the SSI when this happens, it really doesn't make much difference in my income. If they stop SSI, we'll be ok financially... but my first concern is that Mikey continue to get his MediCal without interruption. My second concern is that I may be liable for paying back money I got from SSI because one of their employees who is no longer with them gave me bad advice, and that's a very real possibility, crappy though it is. I may end up paying a fortune to some attorney just to get justice, as I did to make the child support crap happen. Sigh.
You know, in the grand scheme of things, this isn't much. I don't have cancer, neither do my kids. Nobody is dying. Things could be a hell of a lot worse. But this strange sense of justice I have rails at the injustice of it all! Nobody ever told me life was fair, yet somehow I have this warped sense that it should be, and my blood pressure boils over at the unfairness when I work so hard at trying to make things work when other people I know take advantage of the system & get to skate by. Like I don't have enough to deal with, being a single mom with 2 autistic kids. I wonder what the hell did I do in my past life to have life crap on me so stupendously? Was I Atila the Hun? Perhaps a Spanish Inquisitor? Enough already!
Friday, August 27, 2010
Social Media
Sigh. I'm not a writer. I don't tweet much. I'm not a blogger, although this is the first entry in my own blog. I started this as an outlet; I've found that if I cannot actively do anything about a situation, it helps me to get my feelings out in print. Recently I experienced a situation where it wouldn't do any good to 'be honest' about the situation or bring things to light; it would only exacerbate it, and there is no such thing as good drama at my age.
Although I knew all this logically, my feelings regarding this situation continued to seethe. I would wake up at night with the words that I wished I could say out loud repeating in an endless loop in my brain. Finally, enough was enough and I put the words to paper (screen?), rambling out 3 pages of the things I've always wanted to say but never would, because (1) it wouldn't help the situation and (2) the person wouldn't have taken in a damn thing I said anyway (I've tried before - it just got glazed over). I finished it, saved, and walked away.
I slept soundly that night for the first time since it happened, and in the morning, I realized once and for all just how much power the written word has. Simply getting it out let me relax enough to sleep. You know the old saying, "Sticks & stones may break my bones, but words will never hurt me," well, that's a bunch of crap, as any kid who's been called names on the playground has experienced. The physical bruises we get over; the words stay with us, molding our ego and self esteem for good or ill.
Enter the age of Social Media. Wikipedia (I know, not a definitive source, but neither am I) defines it as "media for social interaction". It's supposed to be a good thing - it helps people connect in ways they never would have been able to before the age of the internet. I was one of its first advocates, being one of the small group of women who interacted through the BBS (Bulletin Board System - pre-internet online interaction). For people who are shy; who freeze up when speaking in person, this was a godsend. To a degree, it is still easier for me to communicate online than in person. You have time to edit your thoughts and come back with a response without having awkward social lag time. There are a myriad of reasons why people find it easier to communicate through social media rather than in person.
As my parents tried to tell me, though, easier is not always better, and more often than not, it's worse. There's a big difference between interacting online and interacting in person. The things that are worthwhile (and the things that we end up valuing most) are the things we strive for and work at. When we take the easy road, we fall into lazy habits, as is so easy to do. We start forgetting to call our friends, knowing we can reach them online. We stop making dates to meet up in person; go out for coffee, take a walk with a friend. We communicate in 140 characters, which is barely enough to express a thought, let alone explain it. Not only are the words said; they're now said to the entire world, and are there to be read again and again and again.
And when we get used to this way of communicating, it is even easier to forget there are real flesh and blood people reading our posts & blogs & tweets; that what we say has even more power to hurt, maim, and destroy. I believe this is true because we are no longer in physical communication with a person; we cannot read their facial expression, we can't explain away a phrase when they raise a question - hell, they might not be able to raise a question, depending on the source of media. I know, people have been writing books for years and communicating that way - but that's not what I'm talking about. We don't write books to talk to our children. We don't (I hope) use Twitter to break up or propose to the one we love.
Like most technological advances, there are pluses and minuses. The trouble lies in when we start forgetting how to interact with people and begin to rely on social media to help us communicate. If I am speaking to someone, and they are connected and tweeting at the same time, it tells me that there is a group of people out there somewhere they'd rather be communicating with. It is saying to me that I'm not worth their time, and that hurts. It's like when you try to talk to your kids when they're listening to their Ipod - you know you don't have their full attention. :-) I am a firm believer in 1st amendment rights and the freedom of speech, but I am realizing that if you isolate all the people you know because of your liberal use of the 1st amendment, you will have no one left to speak to; no one will be listening.
I have never been accused of being a great communicator. Hell, I've never been accused of being tactful. :-) But I am beginning to find that in the electronic venue, it is far too easy to forget about any amount of tact. People think it is cool to be "snarky and cutting", and they think it is witty and it ends up being whiny and negative. Perhaps I've just seen too much negativity online. I have a friend from way back; ironically, we found each other again through Facebook. Robert has the most positive attitude I have ever seen. Frankly, to those of us who life tends to throw 'suck you' jabs at, this can get annoying at times. :-) But Robert always has a kind word, a joke, an encouraging phrase; sometimes just a really cool and inspirational picture, and it's rubbing off. I find myself wondering how he would handle situations, and ironically, instead of simply envying his good attitude, I'm trying to strive to have one of my own. The wild thing is: it's working. As I drop the negativity, even though my situation hasn't changed, I find that I actually am happier and do have just a bit more patience at the end of the day. And when you are raising two autistic teenage boys by yourself, every drop of patience counts.
I need to wrap this up & spend some face to face time with my kids (who will ALWAYS come before anything I am doing online). It kind of comes down to this: If you're going to a party with real people - leave the social media till you get back home.
Although I knew all this logically, my feelings regarding this situation continued to seethe. I would wake up at night with the words that I wished I could say out loud repeating in an endless loop in my brain. Finally, enough was enough and I put the words to paper (screen?), rambling out 3 pages of the things I've always wanted to say but never would, because (1) it wouldn't help the situation and (2) the person wouldn't have taken in a damn thing I said anyway (I've tried before - it just got glazed over). I finished it, saved, and walked away.
I slept soundly that night for the first time since it happened, and in the morning, I realized once and for all just how much power the written word has. Simply getting it out let me relax enough to sleep. You know the old saying, "Sticks & stones may break my bones, but words will never hurt me," well, that's a bunch of crap, as any kid who's been called names on the playground has experienced. The physical bruises we get over; the words stay with us, molding our ego and self esteem for good or ill.
Enter the age of Social Media. Wikipedia (I know, not a definitive source, but neither am I) defines it as "media for social interaction". It's supposed to be a good thing - it helps people connect in ways they never would have been able to before the age of the internet. I was one of its first advocates, being one of the small group of women who interacted through the BBS (Bulletin Board System - pre-internet online interaction). For people who are shy; who freeze up when speaking in person, this was a godsend. To a degree, it is still easier for me to communicate online than in person. You have time to edit your thoughts and come back with a response without having awkward social lag time. There are a myriad of reasons why people find it easier to communicate through social media rather than in person.
As my parents tried to tell me, though, easier is not always better, and more often than not, it's worse. There's a big difference between interacting online and interacting in person. The things that are worthwhile (and the things that we end up valuing most) are the things we strive for and work at. When we take the easy road, we fall into lazy habits, as is so easy to do. We start forgetting to call our friends, knowing we can reach them online. We stop making dates to meet up in person; go out for coffee, take a walk with a friend. We communicate in 140 characters, which is barely enough to express a thought, let alone explain it. Not only are the words said; they're now said to the entire world, and are there to be read again and again and again.
And when we get used to this way of communicating, it is even easier to forget there are real flesh and blood people reading our posts & blogs & tweets; that what we say has even more power to hurt, maim, and destroy. I believe this is true because we are no longer in physical communication with a person; we cannot read their facial expression, we can't explain away a phrase when they raise a question - hell, they might not be able to raise a question, depending on the source of media. I know, people have been writing books for years and communicating that way - but that's not what I'm talking about. We don't write books to talk to our children. We don't (I hope) use Twitter to break up or propose to the one we love.
Like most technological advances, there are pluses and minuses. The trouble lies in when we start forgetting how to interact with people and begin to rely on social media to help us communicate. If I am speaking to someone, and they are connected and tweeting at the same time, it tells me that there is a group of people out there somewhere they'd rather be communicating with. It is saying to me that I'm not worth their time, and that hurts. It's like when you try to talk to your kids when they're listening to their Ipod - you know you don't have their full attention. :-) I am a firm believer in 1st amendment rights and the freedom of speech, but I am realizing that if you isolate all the people you know because of your liberal use of the 1st amendment, you will have no one left to speak to; no one will be listening.
I have never been accused of being a great communicator. Hell, I've never been accused of being tactful. :-) But I am beginning to find that in the electronic venue, it is far too easy to forget about any amount of tact. People think it is cool to be "snarky and cutting", and they think it is witty and it ends up being whiny and negative. Perhaps I've just seen too much negativity online. I have a friend from way back; ironically, we found each other again through Facebook. Robert has the most positive attitude I have ever seen. Frankly, to those of us who life tends to throw 'suck you' jabs at, this can get annoying at times. :-) But Robert always has a kind word, a joke, an encouraging phrase; sometimes just a really cool and inspirational picture, and it's rubbing off. I find myself wondering how he would handle situations, and ironically, instead of simply envying his good attitude, I'm trying to strive to have one of my own. The wild thing is: it's working. As I drop the negativity, even though my situation hasn't changed, I find that I actually am happier and do have just a bit more patience at the end of the day. And when you are raising two autistic teenage boys by yourself, every drop of patience counts.
I need to wrap this up & spend some face to face time with my kids (who will ALWAYS come before anything I am doing online). It kind of comes down to this: If you're going to a party with real people - leave the social media till you get back home.
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