(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.
Subscribe to:
Posts (Atom)