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.
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