Sunday, December 16, 2012

Who am I?

Among other identities, I am the mother of a beautiful daughter. A beautiful, 19 year old daughter who from the time she could talk talked about death, drew crayon pictures of dead animals, wrote death threats to us on the exterior of our house in her own blood, wrote notes to us she slips under our bedroom door showing us as stick figures she has killed, and has been known to throw tantrums in young adulthood that medical professionals characterize as psychotic. Does she get any help? I laugh. We scrape the bottom of our budget just to pay for her medication, which costs hundreds of dollars even with our insurance. It's taken until now just to get her semi-officially into a program at least in name, on paper. She has yet to actually receive any form of service though. There is nothing to help her, nothing to help us. No matter what we say to anyone in any agency, organization, you name it the answer is the same: if we have hundreds of thousands of dollars free, we can patch together a form of supervision for her; barring that there's nothing we can do but wait and watch and cry.
Of course, I'm also the mother of 5 other children, several of them having their own "special" needs, as if every child in the world didn't have "special" needs of his own.  But these children have all grown up knowing their older sister is different, that she is going to react differently from others, behave differently.  They've each lost time and attention to this and grown up worrying for her (by age 3, the youngest would comment matter-of-factly, "T is crying again.").
So she is 19.  We've done everything we could ever think of and found everything we could possibly find.  And she's 19, and she's still mentally ill, and she still receives no services beyond the psychiatrist and medications we pay for with some help (but not enough) from insurance coverage.  She has an IQ of something like 140, so smart she was able to stay in advanced math and science and writing classes all through high school even though she almost always failed them, since she wouldn't hand in any work (the teachers always agreed that she was learning everything they were presenting, so they had no objection to her staying in the class, despite the fact that normally a student who had such failing grades would have been put in remedial courses); but she isn't in college or any training program, and she works about 6 hours a week at a children's party place.  She has no plans, or at least no realistic ones; won't cooperate with any real job search or higher education possibilities; and has no social life at all beyond occasionally hanging out with a couple of friends much younger than she is going to the mall or a movie (maybe twice a year).
This is a child who grew up in suburban America, to caring parents with college degrees, who are fluent in English and good at navigating modern life.  This is the best it gets for her right now.
Until access to mental health care and full support for the mentally ill is considered an inherent right, this is life.

7 comments:

Trina said...

Thank you for your insightful blog. I am from New Zealand and sadly there are similarities all over the world when it comes to mental health.

galiah said...

I am so saddened-- because it's just the plain truth, and there isn't anything to do about it. I wish you could send this letter to editors, to the whole world. So G-d forbid the next tragedy that occurs, instead of schools saying, we did all we could, we have proper protocols in place; they would hopefully say-- we will now change legislation to REALLY help the ppl who need it... BEFORE it is G-d forbid, too late...
my heart is with you

Amy said...

Your post hit home hard. We're watching our 10yo son, seeing him head in similar unknown directions, and some of your post I could've written, too ... the high IQ and extra skills in math, but he just sits in school and as long as he's not throwing the furniture, he's welcome to stay ... ??? !!! ... but at least where we are there's mental health treatment available for free or low fee through the municipality, run by the Ministry of Health. If we would've stayed in the States, I shudder to think what would've been our options.

Hoping for you and your daughter and me and my son and all of us ... hoping the light just keeps coming down and makes it a bit easier to see what we need ...

LC said...

Just because I want to know from someone who is in the trenches, and not just spouting some rhetoric, ...if you had unlimited powers and resources, what would you wiggle your nose and put in place for your beautiful daughter? What are the actions we as a society should be asking our representatives for? I'm truly ignorant on this, and trust your judgement...

Leesy said...

Obviously what I really want is a cure for all her mental illness diagnoses. For the immediate future, what she needs is supported housing (with counselor supervision once or twice a day, she doesn't need 24 hour supervision); affordable medications; easy access to competent counseling and psychiatry and other therapeutic programs; and either support to work or even better support for her to be able to go to college. The only chance for that though is intensive counseling and therapeutic support both at the college and at her housing/home situation; she would need assistance even applying, getting accepted (since she really shouldn't even have graduated high school based on her grades and absences), and daily support organizing, understanding, and completing her work.
So what do we demand of the politicians for now? $$$ to programs that directly serve the mentally ill, providing counseling and housing. Increased availability of really trained and competent mental health care professionals, not people who have a 2 year social work degree. A complete ax to the backlog of people on waiting lists for State supported services and to all the ridiculous red tape for services. Affordable drugs and a fix to the under-insurance situation most Americans are in (meaning they technically do have some health and drug insurance, but it doesn't help nearly enough when drugs run $1000/month and hospitalizations or day programs are in the tens of thousands).

LC said...

Overwhelming....

Are there any cultures or governments who do it well? It seems like so much to do that even a complete overhaul of our medical system wouldn't begin to serve the need.

Especially when you consider the people who need similar support and services and have no support from family, as your daughter does from you.

Anonymous said...

In Sweden you get a paid full time assistant/s if you got a diagnosed metal disorder.
You get all the help you need in times of schooling. And you get almost free dental care.
For the state this relatively new law has been very expensive and of course that means higher taxes.