Sunday, January 07, 2007

Vicious Circles

It seems our assigned gasbagger has forgotten all about us. No worries. Dorky Dad is up next week, and I know he won't let us down!

A new semester is about to start, and I can't claim to be on Christmas vacation any more. Time to buckle down and get down to the real-life bullcrap I've been putting off.

New Year, a whole new steaming bowl full of...argh!

For my friends who've stuck it out this last year (and thank you very much for all your support and advice!), you already know about the issues both of my guys face. I won't go into it again, but for those who've only been tuning into my blog recently, these links will catch you up to speed----Wish Me Luck and I'm Still Here. They're about my Big Kid's breakdown and my decision to go back to college with him.

Here's the new vicious circle.

Last semester at college, Big Kid withdrew or failed every class but one. He actually did quite well in the one class we had together, mainly because I acted as his prime disability support. I took notes for both of us, kept track of assignment dates, and basically did everything but beat him over the head with a shovel to make sure he got his assignments completed and in on time.

I'm not blaming him---we spent the entire semester trying to get his meds for Bi-polar Disorder right, and he was unable to take any kind of meds to help with his ADHD or OCD because he wasn't stable and they could throw him into a manic episode.

So while his cognitive ability wasn't affected, his processing speed was so slow that it was taking him 10 times as long to read or complete assignments.

It was exhausting for all of us.

We've just started him back on stimulant meds for his ADHD. While he's feeling more focused and clear-headed, we've also had to balance his other meds, because you guessed it---wham, bam, manic all over again. It's a tricky tightrope act.

The problem is with his insurance. He's over 19, and the only way he can continue to be insured is if he is a full-time college student. There is absolutely no way he can carry a full load successfully right now.

I'm not being pessimistic. I'm being realistic.

Dropping out isn't an option. He doesn't have the skills to get a good job with benefits (he doesn't even drive!), and an unskilled minimum-wage job would barely cover his medical expenses, much less offer him a career with a future.

There is no way that hubby and I could carry the expense ($700-1300 a month) for an extended length of time.

In Colorado, a new law was put into effect last year. Parents can keep their children on their insurance until they're 25, even if they're not full-time students.

Unfortunately, Big Kid is under his dad's insurance which is out of California so it doesn't apply. His dad is trying to negotiate some kind of disability waiver with his company, and we're keeping our fingers crossed. I'm not holding my breath though. His company has been trying to dump the Big Kid off their insurance rolls for almost a year, because he doesn't actually live in the ex's home. This would be an ideal opportunity.

We've applied for disability medical benefits, but have been advised that the process could take around 6 months. That's if he qualifies.

Soooo---what to do? Enroll full-time in college knowing he's going to tank a couple of classes just to keep him insured? Arrghh---what to do, what to do?

On our plate with Little Guy is that he'll turn 17 in a few months (When You Reach a Fork in the Road). We've been advised by his transitions caseworker to start getting the paperwork together to apply for guardianship after he's 18. Meaning we'd have to go to court while he's still a minor, because it's extremely difficult to do after he reaches the age of majority.

This is something we've been dreading and fighting with ourselves about. While we have every hope that he'll be able to live with minimal assistance in the future, he is of the personality that is ripe for victimization. It wouldn't be hard for some unscrupulous character to get Little Guy's signature on something (credit application, rental agreement, etc) that he'd be legally bound to as an adult. Or be in a position like the young man with autism who was hustled into the military by a recruiter with a quota last spring.

Going to court to seek guardianship just seems-----I don't want to say final.

But there it is.

It's like putting an official period at the end of a sentence. I'm not looking forward to it.

So what crappy things are YOU facing this year? Just so I don't feel so alone and all....


Anonymous said...

Wow, you're got a lot on your plate and you didn't even go back for seconds!

It'll be okay though because it's YOU that's the key. To paraphrase your own words: You're a loving mother and devoted wife---you're a funny and engaging person in your own right as well.

The best thing your "boys" have going for them is that you're their champion. My prayers are with you all always. Hugs...

Just Another Old Geezer said...

First, you and yours are in our prayers. You sure have a platter full, kiddo. But you are a strong person.

What are we facing in the coming year? Mrs Myron's Parkinsons seems to be stable for the time being and maybe she'll be one of the lucky PD people that live for many years with no more problems than she has today. And me, nothing more than any other old fool that's been here for nearly 7 decades I suppose.

Anonymous said...

Please don't feel alone. I'm not as brave as you as to writing about it yet (ever?) but I'm facing something too this year. Soon.
Our kids - oh, god, they can break our hearts, can't they?

Big Pissy said...

You DO have a lot on your plate this year! Bless your heart!

In my former job as a paralegal, I saw many, many people who were on disability. It always took them soooooo long to finally qualify. I think the "system" tries to wear a person down so they'll give up on trying to obtain the assistance.

Best of luck with your claim.

Hang in there! :)

Anonymous said...

Happy Blogversary....

Health Insurance completely and totaly blows sometimes.

Nikki said...

((hugs)) Attila.

Gonna be a tough year, but at least Big Kid is coming along okay now.

Think possitive.

Anonymous said...

You are not alone facing crap this year, trust me.

I hope things get better for your boys and for you in the process. Hang in there and remain the strong, positive, ass-kicking mom that you are! Not to mention fun, loving, etc. ;-)
Sending you big hugs.

Mr. Fabulous said...

Wow...I admire your strength through all of this.

I wish I had soem advice or words of wisdom. I'm sorry I don't. But I'm pulling for you guys!

Anonymous said...

All of my stuff is so small in comparison... mounting bills, impending loss of job, my inability to give a shit about same, my suspicion that this inability is why I will need to go see someone about meds pretty soon, dental problems that I can't afford to fix... that stuff is all minor, and so it doesn't really count, I think.
You know I am thinking of you and your boys, Attila, and hoping that it all works out.

Anonymous said...

Student life - you're brave. So it's true what they say, it doesn't get 'easier' it just gets 'different/changes.'
Like you say, illness makes blogging a bit random, but you're a techy type - how can you [one] tie up the blogs you like so that you can visit them?
Great elephant photo by the way.

Anonymous said...

Crappy things....our insurance has been cancelled for our oldest son, and we're struggling with 1500 a month out of pocket for meds.

The meds have to come first, so the mortgage will soon go on rocky footing.

Our best hope is for my husband to divorce me so I can claim medicaid.

Or we move to a more autism friendly state.

carmachu said...

Wow. *sends hugs*

Hang in their kiddo. Yes, enroll him in a couple classes even if he tanks. Its probably cheaper than paying for his meds if you look at it cold bloodily.....

Bad here? Dealing with my outlaws(ie- my wife's parents). They just left, and left my wife upset and angry.

Their nice folks, but WAY too critical. Tehy leave the mrs like this almost ever visit...I'm REALLY am going to love when they finally move to Florida later this year.....

elizabeth said...


Hang in there.

Anonymous said...

You're being hit hard this year so far. You're hands are definitely full. Anything I'm facing seems so small in comparison.

Brenda said...

Health Insurance Companies completely and totaly blow ALL the time. I sure wish you well in your endeavers with them and social security disability. The ones who need them most have to fight the hardest to get them and that sucks!
You're doing all you can do and God Bless you for hanging in there. I'm sure your guys love you for it.

Anonymous said...

Wow. You're dealing with some terrible crap.

Unfortunately, I can tell you in no uncertain terms that you are not alone. I spent years talking with people in your situation. It's tough. I wish you luck.

And I vow, as God is my witness, that there WILL be a gasbag review next week, by gum.

Anonymous said...

Not wanting to complain but.....the IRS always makes me unhappy this time of year,
All that food I ate the other day has inspired me to use the treadmill, that's good...thanks though your comment made me laugh

I have stuff on the plate but nothing like yours..I wish the best for you and hope that all goes well.

abfh said...

On the guardianship application: Please don't do it.

I understand your concerns -- my mother had the same worries about me at that age (and with good reason, I'll admit). Even for an autistic kid, I was awfully "green" when it came to the details of how to live independently. When my mother called me at college to wish me a happy 18th birthday, the next words out of her mouth were "Don't sign any contracts." I spent the rest of the day sulking because she didn't trust me to make mature decisions.

As it turned out, I made it through college without running off to join the Army, the Peace Corps, the Moonies, or anything dramatic like that. Yes, I got cheated a few times by people who stole small items from me, made long-distance calls from my phone, and so forth, but I learned how to take better care of my property. And yes, I didn't have a clue how to manage credit cards at first, but I eventually figured that out, too.

My father is also autistic, and he's been self-employed all his adult life. He has quite a talent for developing and selling products, but for many years, he got cheated regularly by various business partners. By the time he developed a good sense of how to avoid being cheated, he was already in his 40s. But he learned from his experiences, as all human beings do, and for about the past 30 years he has been a successful small business owner.

I understand that it's stressful for a parent to worry about a teenager who is socially naive and likely to be cheated in one way or another, but in most cases (assuming Little Guy isn't gung-ho to go fight in Iraq) the harm is not going to be serious, and it's a valuable life lesson.

I don't know how Little Guy feels about the guardianship advice, or if you have discussed it with him at all, but I can tell you how I would have felt. When I was that age, it never even occurred to me that I was the sort of teenager who could be declared incompetent. I got good grades in school, took care of my chores responsibly (for the most part), and thought of myself as an intelligent and capable person. If my mother had gone to court and persuaded a judge to label me as mentally incapable of making adult decisions, I would have been emotionally devastated.

I don't know if you read the Ballastexistenz blog, but the author occasionally writes about guardianship and how it relates to personal autonomy. She is autistic, uses a keyboard to communicate, has multiple disabilities, uses a wheelchair, and has a staff assistant who comes to her apartment daily. She once wrote that when she visits social services agencies or doctors' offices, sometimes the people there are surprised that she does not have a guardian, because she is the sort of person who is expected to have a guardian.

When certain kinds of people are expected to be incapable of taking care of themselves, that has inevitable social consequences in the form of restricted opportunities and loss of human rights for the people who fall into such groups. As I recall, you blogged about the Ashley X case (that poor little disabled girl who was sterilized and had her growth stunted for her parents' convenience) so you know what can happen when decisions are made based on the expectation that a child will be completely dependent for life. Every time a teenager with a disability is placed under guardianship because that's the routine social expectation for people like him, the cultural attitudes that give rise to such horrors as little Ashley's mutilation are reinforced.

The following poem by Kahlil Gibran is about letting go of children as they approach adulthood:

Your children are not your children.

They are the sons and daughters of Life's longing for itself.

They come through you but not from you,

And though they are with you, yet they belong not to you.

You may give them your love but not your thoughts,

For they have their own thoughts.

You may house their bodies but not their souls,

For their souls dwell in the house of tomorrow, which you cannot visit,
not even in your dreams.

You may strive to be like them, but seek not to make them like you.

For life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.

The archer sees the mark upon the path of the infinite, and He bends you
with His might that His arrows may go swift and far.

Let your bending in the archer's hand be for gladness;

For even as He loves the arrow that flies, so He loves also the bow that
is stable.

Anonymous said...

Your crappy things outweigh mine so I won't even mention them here! Just know that we're all here and wishing you and your kids the best!

Anonymous said...

I am so sorry to hear about that! My heart just breaks for you! I can not imagine how difficult it must be for you. My brother had an unfortunate stint with meds after returning from Kuwait. ( He was in the Air Force) He was always prone to changes in mood and was diagnosed with various learning disabilites throughout school. After graduating, he decided to join the Air Force, and we were all thrilled. However, after returning from a tour of duty in Kuwait, we recognized a distinct difference in his personality. ( My entire family was SCREAMING PTSD.....but OF COURSE the Air Force wasn't going to hear of that!!!!) The doctors diagnosed him as bi-polar and began putting him on various different cocktails to try and stabilize his moods. As I am certain you already know, each set has side effects and different drugs are needed to counteract those. It got so bad that he was temporarily institutionalized after some of the meds caused him to have murderous thoughts! ( MURDEROUS THOUGHTS!!!!!!!!) Luckily, he had enough sense to know that this was not right and sought help. I often wondered how he could function. He took a pill to make him sleep, a pill to wake him up, and innumerable pills throughout the day! Eventually, he was honorably discharged from the military. Yeah, thanks for all your help, but we're just not going to give you disability....thanks! ( Can you tell I am a little bitter?) It was difficult for him, as he was an expert marksman in numerous types of firearms and had plans to work as a police officer after his tour. However, once labeled, he is no longer allowed to carry guns. While he will never be a Rhodes Scholar or millionaire engineer, he is doing well for himself. There are jobs that pay more than minimum wage that do not necessarily require a degree. I pray you ( and he) will find some peace this year. Your sons are so lucky to have such an amazing mom!

Anonymous said...

Wow, I had no idea you had all of this going on.
I don't know about insurance in California but I've worked with several families in Illinois that got the insurance waiver for less than full time school for disabled adults. And in those terms Bipolar definitely counted.
I agree that insurance companies stink like week old road kill.
Good luck to you with both your kids.

Anonymous said...

Yes, I agree with TX Goodie: That is an enormous amount on your late such that you have to syop to breathe! Hope somehow you can get some time-out to just enjoy a movie out!

Anonymous said...

Hey attila,
Please don't feel alone. Heres to lots and lots of strength for you.

Anonymous said...

What a lot of crap to deal with...

This will be a tough year for me as well with my dad and father-in-law so sick they probably won't see next Christmas.

Hugs and Support, Atilla :)

Anonymous said...

I hope the years turns out OK. We've been having a very tough year with my brother going through a breakdown and then a series of incorrect medication. He gave up his job and has not gone back to working since. Really hoping the current medicines work. At this point no one is looking at a bright shining career but just that he gets by without any more attacks and can get back to working. He was lucky that all the problems happened after he had finished his education, but I feel for what you are going through. All of us have just had one predominant feeling last year, worry.

Anonymous said...

I hope the years turns out OK. We've been having a very tough year with my brother going through a breakdown and then a series of incorrect medication. He gave up his job and has not gone back to working since. Really hoping the current medicines work. At this point no one is looking at a bright shining career but just that he gets by without any more attacks and can get back to working. He was lucky that all the problems happened after he had finished his education, but I feel for what you are going through. All of us have just had one predominant feeling last year, worry.

Anonymous said...

Hey Atilla you absolutely have a ton of things to deal with but you know are one incredably strong, smart, resourceful woman and I know that if there is anyone that can get through all of this and still be standing its you !!!!

As for my world, well, I have done a bit of explaining ( long winded as usual) on my blog) the short of it is...both my guys are headed for some medical is facing a surgical procedure soon and today I got the appointment for the other one's MRI.

I am working through my adoption crap and had a good book given to me and I just mentioned it on my blog today.

We are all here for you, when and if you need us. You can bitch, whine and even cry if you want to. Love ya !!!

Anonymous said...

I feel for you. :(

Some of the same things are going on here. My daughter, Artsy Girl, has bi-polar disorder. She's on Medicaid, because she has a low income and trouble keeping a job (partly because of the BPD and party just because of her personality, I think). Her first medication helped a little, then they put her on different meds that helped a lot.

Unfortunately, they then changed her Medicaid plan and the second type of medication is no longer covered. Of course, if she could afford the second med out of pocket, she wouldn't be on Medicaid in the first place; so she's stuck with the first med, for now at least.

Don't ever feel alone. If it's not one thing, it's another...always a struggle for her, and it affects the rest of us, too.

abfh said...

Attila, I just wrote a post about guardianship:

The Freedom to Make Mistakes

Please don't take it as a personal attack; it's not intended to be. I've seen posts similar to yours on forums and other parent sites, and I find them troubling whenever I see them.

Attila the Mom said...

Of course I don't take this personally! I'm trying to make the best decision possible. As always, your writing is very insightful and thought-provoking!

However, there are things about our situation that you don't know because I don't share them on my blog.

If high-functioning autism was all that he was facing, this would be a much easier decision for us to make.

Anonymous said...

*hugs girly* i know how hard it is to do the right thing. it always seems like its a gamble and its always something else, and of course always difficult.
I hope things get a little easier for you and something works out in your favor....
This year Im forcing my oldest to accept public assistance/ job training .....and take personal responsibility for himself and his son. Getting him off drugs was easy compared to getting him help for his mental instability.
2007 is a new year ... lets hope its a good one eh ?

Special K said...

Oy gevalt. I would have a helluva time arriving at a decision concerning any one of those things; I don't envy you, but I certainly sympathize with you. I wish I had something useful to offer you, but I got beans.


Anonymous said...

Ya know, even though it sounds like you've got your hands full, I have a feeling you've got things well under control. Hang tight, lady.

phlegmfatale said...

You know, I really feel for you, and I think it's incredibly selfless that you went to school with your son.

I'm most likely ADHD myself - I have tremendous difficulty sticking with things - and the mystery was solved last summer when a doctor told me I'm hypomanic (at the age of 40!) - it explained SO much of my difficulties in life and in coping, particularly early on. I had a one-year period of Lexapro, but generally I've just been unmedicated and have just made it through the bloody stubborn way I always have (or the HARD way!).

I was very blessed to luck into job situations that took care of me, because I simply couldn't live with my mother for one more minute after I graduated high school, and even if I'd aspired to go to college then, I probably couldn't have focused and made it through. I started college at 30, and though I'm not working in a field that relates to my study there, it did build my confidence tremendously. Anyway, this whole silly ramble about me is meant to encourage you - I've had difficulty with getting along with non-sensical work systems and with focusing on tasks, and I've finally come across something for which I'm perfectly suited and I make a lot of money doing that now. I have to say part of what makes this job perfect is that my immediate boss and her boss understand that I can't function in the typical linear fashion, and so they are flexible with me and give me a lot of freedom, which means I thrive on the positive environment and perform very well.

I know it's difficult and you must have real moments of frustration, but I applaud your creative problem-solving you bring to him, rather than heaping scorn upon what has got to be a painful and lonely experience for him. My sadistic mother made me go to the willow tree to select the switches she whipped me with every single day - it's a wonder I've ever found my way out of it all - when a different approach might have helped me understand that I was just hard-wired differently rather than inherently evil. Anyway - the point is there IS a way out and there is a place where your son will be welcomed and praised for his unique contributions and where he will flourish - don't give up - your love and support will be his ace in the hole - I'm betting on it!

Bless you and your whole family this year!

Anonymous said...

First off - I'm sorry - and life can suck. But you'll pull it off. You always do. As for the answer to your question - what awful things are we looking forward to this year? Let's see. Logan (youngest) is inching closer and closer to his heart surgery, so who knows how that'll go, or if it'll happen this year. He starts kindergarten too - so this is going to be interesting, with the legal medical clearances. Joseph - my oldest - has been referred to the department of mental health for our state. A last ditch effort at going through all our resources. If they can't figure out what's going on with him, he'll go on to a Diagnosis center at Cal State LA. But they won't take him until we've exhausted the county's "resources." So who knows what exciting phone calls we'll receive from the principal's office this year. And my mom has a foot in the grave. So - no. You're not alone in the potential for craptasticness.