Ramblings

Our Government Dollars Hard at Work

2010-03-10T11:26:00.002-06:00

OK, I get that the Census is a big deal, but I have to wonder, exactly how much did the government spend on printing/supplies/postage to send me a letter letting me know that the Census questionnaire will be arriving next week? Is this a practical use of gov't funds when they're talking about a 9 *trillion* dollar deficit?

As I sit here listening to all the dire predictions coming out of Springfield about how they're cutting teachers and social services, etc., how they're going to borrow millions of dollars to pay past due bills, and let the new bills just pile up, it occurred to me that perhaps the most useful budget tool might be to cut the salaries of our illustrious legislators by three-quarters. I mean, come on - they get paid more than probably 90% of the population of the state of IL. I don't know about most people, but when things are tight in my household, we tighten our belts. Perhaps the legislators might learn to be more fiscally responsible with public money when they have to live on the average salary in IL, rather than whatever they are paid. God knows, I can't just go take out a loan when I'm running short - nor would I if I could, because it's flat out irresponsible.

Perhaps we should have an income cap on our legislators, both state and federal. Only people who have actually worked for a living and managed to be fiscally responsible (on a real-world salary) in their personal lives can run for office.

The *last* thing we should be cutting is education funding.

Another Life Lesson

2009-11-03T07:44:00.005-06:00

Long story short, I've been pestering dh for over a year to get a new front door for our house. When it hit -18 last winter (not including wind chill) and ice formed on the inside of our front door, it wasn't enough to spur him.

So when Steve Sullivan of Better Windows and Siding, Inc., showed up at our home last 08/2009 selling doors, I thought it was serendipity. Or at least great good luck. Couldn't have been more wrong.

Not a whole lot of info out there on old Steve, not that I would have found it because I didn't check him out due to a momentary lapse of judgement and the false belief that people are basically good. So, I'll simply document the facts here in hopes that the next mark Steve picks will have a clue or two more than my hubby and I, and will google him. The following information is contained either on the contract that he gave us or from the BBB site (duh - if you're looking for doors/windows/siding/anything, check out the BBB site *first*).

Steve Sullivan
Better Windows & Siding, Inc.
16715 S. Oak Park Ave., Tinley Park, IL 60477
708-424-3536

The above is from the contract. The phone # is disconnected and I assume the address is bad - haven't driven out there yet but I will.

From BBB - other addresses:

16934 88th Court, Tinley Park, IL 60477
3015 Morgan Street, Steger IL 60475

The Steger address is the most recent for Better Windows & Siding, Inc.

So, the facts.

Contract signed on 08/14/2009 for 2 doors. We paid half down. Contract was for installation in 2 weeks. When the time came for installation, Steve Sullivan put us off and put us off, doors not in, special order, yada yada yada. I told him fine, I understood, but my father was coming to visit the first weekend in October and I wanted the doors in by then. No prob.

Last week of September, no doors. More excuses from Steve Sullivan. It went on and on.

Finally a date. Monday 10/26/2009. They would be installed, almost a full 2 months after Steve Sullivan was supposed to install them. He didn't show, didn't call. I called him - "something came up" and he "forgot" to call me. How about Friday 10/30/2009? Fine, but if they were not installed on that date, we wanted our deposit back, period.

Friday arrives and it's pouring rain. Steve Sullivan cannot install doors in rain because he wouldn't be able to do it "properly". I told him that he needed to be here first thing Monday, 11/02/2009. No show.

Now interestingly, throughout the months of October and November, I could contact Steve Sullivan on his cell (which I am not publishing at this time because I couldn't find it independently on line or with his business info - if I can find it in a publicly accessible place, I will most certainly post that as well). He always answered. When I called him on 11/02/2009, for the first time ever it went to voice mail. I just find it interesting.

So, he has until 2:00 pm today to return deposit. Should he fail to return the deposit, these are my next steps:

I'll be heading off to the village police station where I will try very hard to file criminal charges against him - fraud, theft, larceny, something. I'm guessing that old Steve Sullivan of Better Windows and Siding, Inc. is a crafty man and that because of the dollar amount involved, it will be a misdemeanor. However, I'm hoping that if I can find other "customers" (the reason for this blog) and we can show a consistent pattern here, that the police will take this seriously.

If you are a current or former dissatisfied customer of STEVE SULLIVAN of BETTER WINDOWS & SIDING, INC. in TINLEY PARK, STEGER, OR ANOTHER SO. CHICAGO BURB, please leave a message on this blog.

Next step will be of course civil court.

Next will be calls to the state of IL because on his receipt he states he is "licensed, bonded, insured". I will be verifying that and will post the results here.

Lastly will be calls/letters to every media outlet in the greater Chicago area that has a consumer reporter. Absolutely, my husband and I are idiots. We were trying to accomplish something without doing our homework. However, that is no excuse for alleged businesses to take money and fail to perform.

What a pain in the butt.

Regardless of whether or not he returns the deposit, I will publish this blog. There's nothing defamatory in it. Simply a relaying of facts that are verifiable. I leave it to you to determine if you wish to do business with Steve Sullivan of Better Windows & Siding, Inc. It's much easier to make good choices if the information is out there.

I will also be filing a complaint with the Better Business Bureau. He is not a member and his rating is already a C- but... a complaint with hard cold facts will hopefully prevent someone else from making the same mistake we did.

And of course - if it's too easy, it's probably the wrong choice for you. Do your homework, network with people in your community, ask for references, verify licenses first. Use only reputable vendors and craftsman. While it would be nice to think that people are basically decent, unfortunately if they're knocking on your door trying to sell you something, you need to be on high alert. Be smart. Learn from our mistake.

BTW, should we manage to get our money back from Steve Sullivan of Better Windows and Siding, Inc., we will try once again to get a reasonable front door for our home. If it works out, I'll be sure to let you know who was able to successfully complete the task!

The flip side of the Ashley Treatment debate

2008-05-21T19:47:00.005-05:00

So... since my back surgery, I haven't been dealing with Boo's ADLs - hubby has. He's a great husband and father but not the most detail-oriented guy. Boo was sick last week and stayed home, so I handled the daytime ADLs. As I was changing his diaper, I noticed his left hip is popping out; I'm pretty sure dislocating, given the significant deformity. I only know it wasn't happening the first week of 9/2007. Hubby was shocked when I pointed it out.

Quick history - I made a really *bad* decision in 2004 when Boo was 15, and allowed not only fixation of his big toe joints (which had to be done, they were severely contracted and causing him pain), but allowed myself to be talked into doing bilateral peroneal (ankle) and bilateral hamstring releases. My dumb thinking at the time was that the hamstrings were probably going to have to be done eventually so why not just get it over with. Peroneals really had to be done - he wasn't in pain but his feet were really twisting sideways, so that he was weight bearing on the insides of both ankles as opposed to the flats of his feet. Hamstrings were more of a "while-we're-in-there" thing. Hindsight being 20/20, really bad *bad* call on my part.

Now, apparently hip issues are not uncommon in kids with spastic quad. Until the surgery, Boo had more of a frog-like set to his legs, which actually had worked in favor of keeping his hips in place. Post-surgery, he became severely windswept, which is very bad for hip joints. A potential complication I was not told of by the surgeon nor one that we have been able to successfully fight. There's not a shred of doubt that it was the hamstring portion of the surgery that caused this.

So, since this would make a third orthopedic doc (#1 being spine and #2 being feet - who knew orthopods could be so specialized?) out of the "disabled" healthcare system and would equal a very splintered continuity of care for Boo IMHO, I cried "uncle" and made appt at rehab hosp in Chicago. I didn't want to do this because of geography but also because I just really feel like it's segregationist. Why do folks with disabilities have to congregate in 1 or 2 settings in order to receive appropriate care? I've vented on this issue before. But... if we have to be segregated in order for the total picture of Boo's health to be managed, we have to do it. Pretty much a no-brainer.

Anyway, I was driving home from his neuro appt today (wean off meds was a bust - looks like epilepsy is going to be a lifetime issue, even though it didn't start until puberty hit), it occurred to me that my attitude regarding surgery for a dislocated hip might possibly be as atrocious as Ashley's parents' attitude regarding normal growth and development.

See, after the nightmare surgery in 2004, I decided that the absolutely only indication for any type of surgery in the future for Boo would be for comfort measures only. He's not ever going to walk. He kind of weight bears, but only in a stander; doesn't do it for transfers or for any functional reason. I do worry about his circulation and issues with lower extremity edema that seem to have gotten worse as he gets older, another issue for rehab doc (who BTW specializes in seeing only folks with CP, ages 18-35 - interesting). Weight bearing for him is better than not, but... is it so important that I would subject him to a surgery to fix his hip? Until this afternoon, the answer was "hell no".

And then I thought of Ashley. Her parents removed organs that she will never use as they were meant to be used. Would I not be just as morally bankrupt for failing to allow repair of a joint just because he doesn't use it in any functional way, and is not in pain?

Not that surgery will be the answer.... to be honest, I don't know what if anything is done for hips that dislocate. But I tend to expect the worst, and surgery would be the worst.

I honestly don't know the answer here. Is there a difference between ovaries and hip joints? OTOH, haven't I already majorly fucked up here by allowing the hamstring surgery, which created this problem in the first place? Is there any guarantee that I won't screw up again and allow them to do something that will have other negative consequences for him in the future? Did I learn enough last time to be a better advocate should surgery be recommended again?

Am I just completely unprepared to be my son's effective mother???

I don't know. But I don't think I can try to anticipate the future in absolutes for fear of making the same type of mistake that Ashley's parents made. It was just a shocking realization.... that I might possibly, unwittingly, be of their same ilk. God help me. The road to Hell is paved with good intentions - I just never thought her parents and I might actually be on the same road.

In the end, I will do my best to let Boo make this choice. He remembers the last surgery. It was horrible. In spite of reassurances from surgeon beforehand that pain management was the #1 priority, my son suffered horribly. It's the only time I've ever cursed loud and long at a physician. And still Boo suffered. But it is Boo's hip and even though it doesn't seem to be causing him pain, he still needs to have input into treatment of it, whatever that may entail. My job is to be better educated about the next surgery, including any and all potential ramifications, and to make sure that Boo has all the information necessary to make the decision. I hope I do better this time around for him.

And now for the Twilight Zone

2008-03-28T16:25:00.003-05:00

Out of our 4 children, 2 have significant disabilities. Boo has CP, which is evident given previous ramblings. Bear is mentally ill. He's been diagnosed with the entire alphabet over the years but the most consistent (and I think closest to accurate) diagnosis is bipolar which was first applied in 1997. I personally think there's also something on the PDD spectrum going on, perhaps this which fits him to a tee, but because he's not stereotypical PDD I've never got much play from docs.

It's made me a bit schizoid myself. On the one hand, I ardently believe in the right to self-determination and inclusion. I've unsuccessfully fought for it for Boo (living in IL, you're pretty much guaranteed to lose that battle), but I haven't given up. On the other hand, I absolutely do *not* believe in it for Bear. I know this flies in the face of many advocates' beliefs. Think about it though. By definition, can a severely mentally ill person self-determine?

I know, I know... what a shock. A teen diagnosed as "bipolar". It's the flavor of the decade. We had "adjustment reaction" in the '80s, "ADHD" in the '90s, and "bipolar" in the new millenium. How about just bad parents? OK, I'll tackle that one since I've certainly run into it enough.

We cannot possibly be such horrible parents as to have provoked/instilled/created Bear's behaviors. We have raised a child with significant physical disabilities. We're also smack dab in the middle of raising 2 younger children who, in spite of a family life that is about as far from "normal" as you can get, seem to be remarkably well adjusted and healthy individuals. We're not drug abusers, alcoholics, pedophiles, or abusers. Prior to Bear hitting age 6, there was no violence in our home. Since then, the only violence perpetrated has been by him. None of us has been immune to it.

Parent training? We've done it all. At some point, I quit getting pissed off at the professionals who blamed us for Bear's difficulties. Far easier to do their training, employ their plans, follow their directions, and let them see first-hand that Bear has some very significant deficits emotionally that are far above and beyond whatever parenting faults we may have. We haven't been perfect, not by a long shot, but by God we have tried. And we keep on trying.

Quite frankly, I don't care what you call Bear's disability but he does have a severe and life-limiting emotional disability. By virtue of his completely whacked out thought processes, he should not be allowed to self-determine. But he will be, because treatment cannot be forced once he hits 18 (in 11 short months). We can obtain guardianship, but I quite frankly cannot see the point of it when he has the "right" to refuse all treatment. God help me, I'm tired of the phone calls and the hospitalizations and the fear and the worry and the drama.

Bear has been in institutions since 2000. Most good, one bad. He does well in a highly structured locked down environment. "Doing well" meaning that he is less violent. He's still noncompliant, still adamantly refuses to acknowledge that basic social norms apply to him, but at least he's not breaking bones and drawing blood. We've tried twice to have him return home to live. The first time, we tried to duplicate the structure of the RTC. Impossible to do in a family home with no supports or respite, to say nothing of a family that is also trying to meet the needs of a child with at the time uncontrolled epilepsy as well as 2 young children just trying to grow up. Bear fell apart in 3 months, with the final act being the buck knife he hid under his bed, with the intent to harm someone (himself or us, who knows for sure).

The second time he came home was because of an abusive RTC and expulsion from school (yep, in IL special ed schools can expel special ed students, IDEA be damned). The RTC was subsequently shut down by the state. I carry guilt for not having pulled him earlier but I thought perhaps by not being in a touchy-feeling therapeutic environment, Bear might ... I don't know, realize that there were a lot worse places to be than at home and it might be worth the effort to not try to kill us all for the sake of living with his family. We made 3 demands - no violence, take his medications, attend therapy. I homeschooled him, something I never thought in a million years I thought I would try. That was more successful than public school had been but Bear decompensated again in about 3 months, this time with truly horrific verbal and emotional torture (abuse is too mild a word) of his younger siblings as well as the now familiar violence.

So why am I exploring this now, putting it down in words? Because at 17, after 7 years in various institutions and about 9 months in a "transitional living program" that is supposed to be helping learn life skills, I have a son who is blatantly suicidal and is now hospitalized for the 25th time in his short life. He refuses to bathe, go to school, get a job, get invested in his life. The TLP staff will not force issues - RTC staff at least would insure he was clean and well maintained. I am faced with a paucity of choices for placement. He's a smart kid, no cognitive deficits when he's psychiatrically stable, very well spoken. He knows what he needs to do, simply refuses to do it because of his "pride". I'm stymied because I really don't see what pride has to do with taking a shower or brushing his teeth. I'm baffled because at 17 I was one of those kids who couldn't wait to get out of the house, have my own job, my own space, my *own*. His only goal is to return home to live, which is quite frankly no longer an option.

When he moved to TLP in 7/2007, we laid out the ground rules. He was more than welcome to return home once he could show he could do basic ADLs, attend school, do chores, and comply to staff directions, all without violence for 6 months consistently. Not perfectly, just consistently. He has refused, stating that he already knows how to do all that and will do it when he returns home, but won't do it before then. You see the problem? Catch-22. He can't come home until he does it, and he won't do it until he comes home.

So his suicidal ideation, his cutting, his lack of hygiene and education are all our fault. Because we won't let him live at home.

So I search for yet another institution, one where staff will risk the wrath of a 6'2" 220 pound man with a 2-year-old's temperament to insure he's clean and in school. But it's a cork in the dam that will be Bear's life, I fear. A therapist told us over a decade ago that Bear will only change his behavior when it becomes too expensive to stay the way he is. So far, Bear has a limitless capacity for misery. I dread the phone call from my cold, homeless son, begging to come home, because I will have to say "no". I dread the call from the jail when he asks to be bailed out, because I will have to say "no". I dread ... so much.

I don't know how to get him invested in his life, to quit feeling that he's at the mercy of his placements. We've told him for 8 year that he is the only one who can control where he lives and what the quality of his life will be. I'm pretty much damn done with taking the rap for his misery. I'm truly truly sorry his head is messed up. The fact that he has spent a full half of his childhood out of our home is a pain that I cannot begin to express. We thought we were giving him the very best opportunity to be an independent, happy, healthy adult. Maybe we screwed up from day one. I don't know. We tried our very best with what we knew. We've tried not to be careless.

All I can do now is pray that we can keep him safe until he refuses to let us do so, and that once he exercises his "right" to self-determination, he will not hurt anyone else.

But more than anything, I hope that loose piece falls into place and he takes ownership of his own life. He can blame us for whatever, I don't care so long as that's not his stopping place.

I'm sure more to come as we go these final miles with Bear.

People with Disabilites Not Welcome

2008-03-25T17:17:00.010-05:00

This should replace all those scenic "Welcome to Illinois" signs at the state lines:

Well, the state of Illinois has finally topped every other state in the nation. Kudos. I'm so proud to be a citizen of the Land of Lincoln.

I thought I'd check out our state DDD website. Can I just say, give me a break? "... learn more about the services we provide." Hmmm, can I learn more about nothing? "Sign up for our database"... sounds really good, right? Puleeze. What this means is you can schlep to your "nearest" office which in our case would actually be 5 miles away, but because it's in a different county, we have to schlep *45* miles away to the "nearest" (in our county) office to fill out a 15-page form in front of some clerk who's being paid God knows how much to watch me fill out the form. This information will be updated yearly, requiring another 45-mile trek to fill it out under the watchful eyes of the clerk. You cannot fill it out at home and mail it in. Apparently the caregivers of IL are too stupid to do that. We must be supervised. We must take time off from *our* jobs to make the clerks' jobs more convenient. Oh, and does this mean we'll get services or funding or anything? Oh no no no no, you deluded souls you. This is simply "signing up for the database".

I just love the name of this form. PUNS. I kid you not. Is that perfect? Stands for Prioritization of Urgency of Need for Services. I think CRAP would have been a better name - Couldn't give a Rat's Ass about Prioritization ('cuz in IL we don't fund services for cripples and retards).

Now I hate to criticize the disability advocates but PUNS came about because IL didn't keep track of who they weren't serving. Advocates stepped in and sued. So now, IL is spending who knows how much *not* to provide services but to keep track of all the people they're *not* providing services to. And disability advocates think they won on this one? In what parallel universe?

Hell, we could probably move back up to our 2007 ranking of #47 if we just take the funding for the clerical and accounting PUNS staff and the web design for the delusional IL DDD web site and instead convert that into PCAs for.... I'm guessing we could probably get services for a couple hundred people a year.

The Sneeze That Rocked My World

2007-12-20T20:04:00.000-06:00

So, when we last left our heroine, hubby was off to visit his parents with 2 youngest kiddos and she was schlepping along, rather unsuccessfully, home alone with Boo.

The day after my last missive, we were struck with the thunderstorm to beat all thunderstorms. In 20+ years in the Midwest, I've never been that up close and personal to a storm that even approached this one. First storm blew through about 3 p.m. and knocked out power. Hired aide came and put Boo in bed about 6:30. About 7:00, part II came barreling through with the force of a blast. I couldn't get Boo up, because I wouldn't have been able to get him back in bed, so I went and lied down with him, shielding him as best I could with my body, thanking God I had convinced hubby that we should get rid of massive oak that would have, without question, have come plowing through the roof on top of us if it were still there.

I'm not a particularly religious woman but I prayed that evening like I haven't prayed since the twins were born so sick almost 19 years ago.

We lived and I was surprised and profoundly grateful. Which was a good thing because my gratitude overpowered the immediate misery to come. No power means no sump pump. No sump pump means flood. Big time. 3 feet of water in basement greeted hubby. A basement that had become a collection area for unsorted laundry (months' worth), toys, games, miscellaneous documents, etc, to say nothing of the brand new furnace. It's kind of funny - when I realized it was starting to flood, I ran down and picked up all the various video game consoles, controllers, and games. Didn't occur to me to save the irreplaceable stuff, like family photos. They were on a shelf. About a foot off the floor. Live and learn I guess. Heck of a way to learn. So we lost photos and a lot of other stuff that I didn't even bother to look at too closely. No point. We did laundry at a laundromat for days. Used 6 bottles of bleach. Had to tear out carpet, drywall. Dragged a wrecked bookcase up, books, mattress, boxspring, I swear hundreds of saturated stuffed animals, boxes and boxes of stuff. Lots of heavy labor that we did on our own.

Not good for a back that was already hurting from lifting Boo. By Labor Day, I was in excruciating pain, unlike anything I've ever felt before. Funny thing was that it wasn't my back - it was in my hip and shot down my right leg. I spent that Tuesday calling docs, trying to get in.

Now, I absolutely *refuse* to see a doctor for myself. Kids all go, hubby goes, not me. I generally dislike and mistrust them. They never have good news. And I don't take medicine, aside from OTC ibuprofen. But this was not something that was going to go away, so I found a doc who would see me that Tuesday as a new patient. Of course (big surprise), he prescribed pain meds. Hydrocodone. OK. I was so miserable I was willing to mask the problem with drugs. Go home, continue on with my frozen spinach modality with the drugs. Thursday finds me *and* hubby back in doc's office with me barely able to walk anymore. He says "I'm going to admit you". You can imagine how enthusiastic I was but again, pain has a funny way of changing our minds.

Long story short, morphine was good for pain but disappointing in terms of it's potential as a recreational drug (look - if I'm going to be drugged, I would prefer a little stupor with it). Unfortunately, a severe nursing shortage, a fall in the hospital shower with no assistance from nursing staff, a blown IV, and the of course aforementioned nursing shortage had me signing out AMA 48 hours later. Before getting my behind out of the deathtrap, I did get the news that I had a severely herniated L3/L4 disk. Knowing how I feel about doctors, can you imagine how I felt about surgery??? I talked surgeon into trying an epidural instead (had one of those before, worked great for childbirth). My AMA bolt put that on hold.

Another life lession - always make sure you at least have bus fare. Not that I live in an area that has great bus service but I sure as heck didn't have cab fare so I trekked to bus stop and paid the fare in dimes. Embarrassing. Starting walking the 15 blocks home after I got off bus. Thank God I had enough morphine left in my system. And I further thank Him for my neighbor who somehow recognized me in my pitiful state - waist-long hair that hadn't been brushed in 2 days, hunched over my cane.... all I was missing was a wart on my nose, a pointed hat, and a cape. I got the best ride ever home!

Ended up in an ER at a different hospital 24 hours later. When you can't walk to the bathroom to pee, measures need to be taken. Another admission, more morphine (though not patient controlled this time so pain was present more often than not), and finally a visit by a new surgeon on Monday. Luckily, I knew this guy. I posted about his practice here. He seemed to be a decent and honest (rare) doc. And of course I was out of my mind in pain. Begged first for a catheter so I could finally pee. I apparently cannot do bedpans - but perhaps the priest giving communion to my roommate at the same time had something to do with that. I'm not kidding - he's saying "In the name of the Father, the Son, and the ..." and I'm praying "Please GOD let me pee". Anyway, then I begged him to fix me, however he thought he needed to. Surgery? Not a problem. Give me a valium and I'm all yours (I've never taken valium before but thought that might be a good time - I was right).

So surgery on 9/10/2007, removal of "three very large pieces" of herniated disk. Surgeon was very impressed with my herniation. Somehow, I'm not thinking that's a good thing, you know? Head home the next day, meds for pain which miraculously had disappeared. Really amazing. Leg was numb on one side but I figured that was from residual trauma to nerve.

I had really bitten the bullet and called my mother to come help keep kidlets in line. My mother and I have a few unresolved issues, but emergencies are emergencies. So I behaved. No lifting. Very light walking, no huge distances, half a block working up to a block after a week. Doc said I could go back to work after a couple of days (I type for a living, work at home) so I did, but only part time because my stamina was really gone.

And then the sneeze that rocked my world. 8 days postop. Sitting at my desk, typing. I sneezed. I heard a pop in my back. I felt instant return of pain. I was stunned and in denial. Thought I had just overdone it, so I stopped working and went and lied down. Pain increased over the next 2 days to just short of where it had been before. Called doc's office and was advised to take ibuprofen. By the next day, I knew I was in big trouble again. Paged doc, explained what I was feeling. Time for another MRI, vertical this time.

It was a scene that is beyond words. Took me a half hour to get from van to MRI office because I could walk 1 step at a time, then have to stop and cry. Hubby finally thought to go get wheelchair. A vertical MRI with a herniated disk is a special kind of hell. I was a hair away from passing out by the time they ended it. MRI confirmed a reherniation. You have *got* to be kidding me. All because of a sneeze?? Apparently not unheard of. Life is bizaare.

Another abortive attempt at admission that day (9/21/2007) for surgery that ended with me screaming at a nurse because of her stupidity. While I have strong opinions, as a general rule I do not scream at people, ever. I'm sure this makes sense to someone but not to me: Blood tests had to be done to make sure the ibuprofen hadn't screwed up my clotting before surgery could be done. Pain meds could only be ordered by anesthesiologist because I was NPO in case of surgery. Anesthesiologist wasn't going to be called until after my so-called STAT lab work returned. So no pain management until we knew we were doing surgery. Makes no sense whatsoever.

Four hours after I got to the hospital, 8 hours after my last pain medication, nurse was doing hell if I know what but she wasn't getting my lab work results and she wasn't addressing my pain (which it seems all hospitals make a big show of how they'll manage your pain until you're actually *in* pain, then you're just SOL). When lab techs showed up for a second round of blood draws, I lost what little sanity I had left. It wasn't pretty. I had them page surgeon who was in OR on another case, I told him I was going home and I'd come back Monday, well pre-medicated, and he could do his thing then.

And I did. And he did. And I didn't sneeze for a month after that. I shoved a *lot* of Kleenex up my nose, but I didn't sneeze.

So here we are, almost 3 months postop (the second time around). Back is ginger but ok if I'm really really careful and think through virtually every movement I make. I've discovered that not all physical therapists are sadists and that *some* doctors are worth their weight in gold. If you're in pain and heading to a hospital, take a lot of meds before you get there. It takes 2 weeks to lose 14 pounds and 2 months to gain it back. I don't recover well from surgery in terms of stamina. Ended up having to take a leave of absence for 2 months because just getting to my chair, sitting down, and turning on my computer turned me into a puddle. I have a fantastic boss. I slept in 4-hour spurts round the clock, interrupted by hours of exhausted wakefulness. I have nothing left in L3/L4 to herniate, and apparently not much left in other lumbar spaces. If I screw up my back again, I'm looking at fusion of at least one space, probably more, and a minimum 6-month recovery. Exercise is my friend and best defense against re-injury (it's all about core strength). Ice and snow are bad things with a sensitive back. When I sneeze now, I clutch my sides to spread the force. I'm still a little PTSD about sneezing, and still shoving Kleenex up my nose and yelling to try to avoid a sneeze. Youth is fleeting and middle-age decay bites. My husband is a saint. I'm a real bitch when I'm sick/in pain/incapacitated. I don't care what my mother thinks, my kids are *awesome* and showed some amazing character through this whole disaster.

And I will never again be able to lift my son.

Campaign 2008

2007-12-20T19:47:00.000-06:00

Been a while, have much to document for posterity, opinions, and such, but am caught up in the madness of pre-Christmas last minute-itis. Tune in soon for the sneeze that rocked my world.

Had to just share a funny call I got this evening. Only reason I answered the phone was because caller ID said "FEDR" so I was hoping it would be a Republican I could screw with. Yep. Be still my heart, a little levity in the midst of chaos.

It was a prerecorded survey by an actual congressional candidate. Introductory speil, and then the questions (given out of order and paraphrased because my recall ain't what it used to be):

Candidate: Are you prolife?

Me: No.

Do you support the NRA and their fight for Americans to bear arms?

No.

Do you support the war in Iraq?

No.

Do you think our troops should stay in Iraq until a functional self-goverment is in operation and their security forces are able to insure the safety of their citizens?

No.

Do you want your taxes not to rise, and in fact be lowered if at all possible?

Yes.

Great - I want to work with the president and congress on lowering taxes.

Do you think illegal immigration is an important issue?

Yes.

Do you think the border with Mexico should be tightened?

Yes.

Do you want to see continued health care for low-income children?

Yes.

Great. I want to work to insure blah blah blah. Will you support me in this effort?

Yes.

Great. Will you vote for me?

Uh... maybe.

Will you vote for me?

Maybe.

Will you vote for me?

No.

Are you male?

No.

Are you over 50?

No.

Thank you for your time. Check out my website blah blah blah or call me at blah blah blah. This survey was prepared and paid for by the Committee to elect blah blah blah.

Hmmmm, can you guess which answers I gave were "right"? And can you guess what his target demographic is? I'm sure the next demographic question, were I male and over 50, would have been "Do you make over $500,000 a year"?

Gotta love those politicians. At least they give good entertainment value (sometimes).

Aging all around

2007-08-22T20:57:00.000-05:00

Was hit full force this week with the reality that I am getting old and that my children are growing up.

Hubby took younger 2 beastly children off to see his parents, grandparents, and siblings. Trying to be a responsible parent, I set out to hire someone to come in and help me get Boo into bed for 7 nights. I was slightly more than halfway successful. After going through several nursing agencies who informed me in a slightly superior manner that they don't "do that kind of nursing", that they're a "private duty nursing agency", or that "there must be a medical necessity", I finally found an agency that had someone who could help me 4 of the 7 nights. Let me tell you, this woman is amazing. She just bops in, lines up the chair next to the bed, gives him a bear hug, and pivots him to a seated position on the bed in what has to be textbook fashion. Of course, she's a good 6" shorter than me and probably 100 pounds heavier, but darn... she makes it look so easy. Takes her 5 minutes, for which I'm paying 2 hours of the agency's rate, but it's worth every doggone cent. Wonder if that's tax deductible....

Anyway, the first of the 3 nights with no help, I tried it myself. It wasn't pretty but Boo sure was quite entertained, which of course made it that much harder. Trying to maneuver a highly amused severely spastic quad is like trying to ... gosh, I can't even describe what it's like. Let's just say it's interesting. At one point I was flat on my back on his bed, with him kind of sideways on me, arching like crazy, laughing like a hyena (so glad I still have some entertainment value). Had a split second of panic, thinking I was never going to get him off me and I was going to asphyxiate, with him laughing the whole while. Finally got him on his stomach instead of mine and was then faced with the challenge of getting him to roll. By this point, his muscles were just rock solid from all his laughing, not a smidge of flexibility. Guess those gazillion years in PT weren't a total waste because I remembered the strategy of getting one arm above his head and having him roll in that direction. Phew. Mission accomplished without any trauma to him, plus a good 30 minutes of belly laughs, but in the process I managed to really tick off those doggone herniated/bulging/torn disks.

Reality has hit. I simply am no longer physically capable of getting him into bed. It's quite sobering and scary and incredibly sad. What on earth do we do now? Fortunately hubby doesn't travel nearly as much as he used to, but there are still the obligatory training sessions a couple times a year in Houston. And what happens when He-Man of the Universe starts falling apart too? What do people do?

And you know, for a change, this really isn't all about me, at least not this part. It's so incredibly unfair to Boo. He's a vibrant 18 y/o man who wants to go out and do things and see things and be part of the world. It's hard to do when his only source of propulsion is sprawled out flat on the floor, popping ibuprofen like they're jelly beans, shoving all manner of frozen bags of veggies down the back of her pants to try to at the very least numb the entire lower back and right leg if not perhaps actually coax the darn nerve into quiescence. He deserves better.

I'm sure at this point I should get him on Medicaid, though I kinda think Medicaid wouldn't have been much help today. I've been avoiding getting too educated on alleged adult services and how all the funding crap works. Denial is a great thing - if I don't learn about it, I won't physically fall apart and we'll never have to address it. Ha. Not working so great anymore. I should probably also contact DHS/ORS, even though I already know the spewage we're in for. He "doesn't qualify" for DHS/ORS services because he's only 18 and is still in school. However, please do fill out this 18-page questionnaire (no kidding) that asks incredibly personal questions that are really none of our business because we have to have it on file just in case you ever do want to get services and he qualifies. Of course, we will have to update the questionnaire every year, even if we're not providing services, and filling out the questionnaire in no way, shape, or form is meant to imply you ever will receive services. And no, you can't just fill it out. You must trek into your nearest DHS office and sit still for however long it takes for one of our clerks to fill out the questionnaire because.... I don't know, they have to justify funding these clerical positions instead of actually providing services? Oh... and even though you live 1 block south of the Cook County Line and 5 miles from a Cook County office of DHS, you must schlep 40 miles to Joliet to fill out the questionnaire in the appropriate DHS office for *your* county.

Ewww, sorry, go lost in that particular sore point. Bottom line, DHS isn't going to do anything to help us care for Boo at home (Olmstead be damned) but I'm quite sure they'll be falling all over themselves to get Boo in an institution or "group home". Which, God forgive me, I actually contemplated this morning. I had seen an ad on TV about a year ago for group homes for "your special family member" (gag - condescend much?). Had made a note of the url, and looked it up at some point. Several placements very close to home, lots of happy testimonials from parents. In my emotional state this morning, I was thinking that maybe a group home would be a better place for him - not for me, I think it will darn near kill me to have him leave home and be cared by others - but for him? To have people who can consistently transfer and propel and provide opportunities for activities daily? Aw heck... I don't know. I could just be rationalizing it all at this point. The guilt is overwhelming, that I can't take care of him like I used to. And I'm tired, miss hubby, miss the littler 2 beasts, am in pain, and can't even have a real glass of wine to go with my whine.

I won't make any decisions or choices until hubby returns and I can get some sleep. But my denial needs to get toned down a bit... for Boo's sake.

So the beasts are off visiting hubby's family. They're a different kind of family. Wild. Loud. Hyper. Irreverent. Wonderful fun, the kind of family I would've loved to have grown up in. On night 2, Weeburt just couldn't be bothered to talk to me. Granted, he's 12. He's entering that dreaded teen stage where monosyllabic is about as good as it's going to get. Plus, his voice has dropped about 20 octaves and apparently my hearing is going the way of my back because I cannot for the life of me hear him anymore. I call him "earthworm" because they must be the only species that can hear him half the time. So he's mumbling barely-audible single syllables on the phone and I got irked. This is my baby boy! He's supposed to be all light and happiness and overjoyed to hear his mother's voice. He's supposed to miss me and be so glad to share the tiniest details of his day on vacation. He should be regaling me with stories of the craziness going down there, spending at least a half hour sharing. Uh... not so much. So I'm irked. Diva gets on the phone and even she didn't have much time for me - and she's only 9, my chatty Kathy.

Crushed, I was simply crushed. I said my good-byes and hung up. Sat here getting ready for a real sulk, when it hit me. This is so normal. This is what they're supposed to be doing. Spreading wings, enjoying themselves, not pining away for Mommy. I am getting old and they are growing up. Quite a devastating realization because my kids are just the cat's meow. They are my world (egads, just writing that makes me slightly nauseated because that's just so not how I ever thought I would feel - I was an independent woman, self-sufficient, now reduced to a puddle because my kids and husband have been gone for 5 days). But right after I got over feeling like I'd been sucker punched, I was hit with a sense of peace. We must be doing something right because the kids are doing what they're supposed to be doing. They are great kids, polite, respectful (for the most part), good, strong, solid little people growing really well into remarkable bigger people. I need to let them have their freedom and enjoy it, without spoiling it with mother-guilt because they're doing something without me.

BTW, Boo and I didn't go because I cannot imagine getting Boo safely on a plane - don't think they make seating systems big enough for him. I do not fly anymore. I've done the plane thing, I don't like it. I no longer feel the need to put myself through that experience. I lived in Hawaii for a couple of years, I've done my fair share of air miles, and I just do not see the need for doing something I don't want to do anymore. Not happening. With age comes the right to just say "no". Plus, I blew my vacation time when Boo was in the hospital. So I stayed home to work so we can pay for the vacation, and Boo is hanging with me, watching a gross amount of MTV fare and laughing his eyes out.

While the little ones were gone, I thought I'd monitor their email accounts. We just went wireless, which to me is just so much magic at this point. Done the internet safety lessons ad nauseum, I have access to every inch of what they do online, etc. Imagine my delight at finding an email in Wee's inbox with the subject line of "don't tell mom". Something's afoot. It's my 16 y/o, Tee.

Tee, bless his heart, is bipolar, or something. I don't even know anymore. It's been a long road with him. Meds and shrinks and hospitals, and 7 years of institutions. He's progressed to a step down placement now, working on learning how to live in an environment without locked doors and prn meds, hopefully without escalating into violence anymore. So far so good, but it's only been a month. Previous honeymoons after discharge from RTCs have lasted about 2.5 months so we're not quite halfway to breathing a cautious sigh of relief. Anyway, at some point along the way, Tee was introduced to Wicca. In and of itself, I don't have a problem with Wicca. A spiritual system that advises to do no harm, that teaches that whatever you do will return to you threefold (Golden Rule?), is just fine with me. It's just that Tee doesn't understand spirituality or moderation. It concerns me when my occasionally psychotic son tells me that he can't wait to do spells because then he will be able to "fix the world". His unusual thought process doesn't allow him to understand that if a spell that was all it took to fix the world, it would've been fixed a long time ago. Only he is special enough to fix things. He is so completely obsessed and consumed by it. At first, while not actively encouraging his fascination, I did learn enough to be okay with it. However, just as I would be (and have been) uncomfortable with Christians who couldn't make a simple decision like whether or not to buy an ice cream cone without praying about it (true example), I am equally uncomfortable with a wanna be Wiccan who cannot hold a cohesive conversation about much else, especially when it's my son. Also, heaven help me, while I like to think I'm fairly liberal and independent-thinking, I see Tee further making himself incredibly and noticeably "different", essentially ostracizing himself even further from anything approaching social norms. (Sheesh, does that sound conformist or what??) We've spent years trying to teach him the skills he needs to be able to function within a community and his in-your-face Wicca obsession just is not helping.

Uhh... where was I? Oh yeah, "don't tell mom". Tee sent Wee "educational materials" on Wicca. Which I had forbidden in my home due to Tee's obsessiveness. Which he knows. And I had very *specifically* told him that under no circumstances is he to share the wealth with his sibs. ARGH! OK, possibly typical teen crap, possibly the best effort he is able to make at forging some kind of relationship with his little brother, but... oh.my.gawd. Sometimes I feel like I'm just dancing on fires, here, there, everywhere. Thank goodness Tee is off camping with his program for the next few days. I will find my detached, unemotional voice again to point out to Tee the blatant violation of rules, the unfairness of putting Wee in the middle of it (Wee doesn't know I know), and to once again voice my very serious concern that he is not being a well rounded human being (I did sent him an email telling him he was majorly busted). But I also realize that at 16, I have very little control over the choices Tee makes. It scares the stuffing out of me because Tee doesn't always have much control (or at least doesn't exert much control) over his choices.

To top off my aged day, as I'm getting Boo ready for bed tonight, we were listening to the local alternative music station. Boo loves the music (Pearl Jam, Nirvana, Beasty Boys, STP, Alice in Chains, etc.) and I do too. But... there was a song playing as I'm hooking up the feeding tube and ... I'll be darned. It's a cover of an old Cyndi Lauper tune... "if you're lost, you can look, and you wil find me, time after time" (OK, so I'm sure I screwed the lyrics up but you know the song if you're over 30). And then, I swear to God, the very next song was a cover of an old Led Zepplin tune - my dementia is kicking in and I can't remember the lyrics. I just thought it was so fitting... I'm so old, I know the lyrics to the "new" songs now.

Off to find my ibuprofen and my refrozen spinach now. Midlife crisis #439 over.

And now for something completely (not) different

2007-07-17T18:23:00.000-05:00

Having lived in IL for almost 10 years now, I've almost made peace with the fact that FAPE in LRE doesn't exist here, never has, never will, with the divine blessing of OSEP and OCR. But... great news! Boo's high school class (you may remember, the chess-piece class that has been shuffled around the 'burbs to whatever building - doesn't have to actually be a school, can be an administration building - has "space", regardless of the location or the intended age of the pupils in said building) is actually going to be in a *high* school this coming school year, having spent this year in a junior high 20 miles away. Oh my word, someone help me get up off the floor!

Oh, but wait... we're in IL. There must be a catch. Hmmmm, what could it possibly be? Oh, I remember now. The class is going to be located in a high school that is no longer a high school, because right *next* to this high school a brand new $50.7 million dollar, 320,000 square foot beauty has been built, complete with a 140-meter indoor track and spiffy new mounted digital projectors in every classroom. Whoo-hoo-hoo-weeeeeee! But they didn't allow space for "those" students. So Boo's class will be in, drum roll please, an *empty* high school. Well just dang it all, what more could we want??? Continued exclusion and segregation, all part of IL's plan to turn these kiddos into compliant "consumers" once they hit the nonexistant adult services stage, grateful for every little shred of human decency and quality of life that may accidentally come their way. And hey, since it's an *empty* high school, bet it will be *decades* before they run out of space. Aren't we just the blessed and lucky bunch of folks, to finally have a permanent space (because according to OCR, it's the *program* that is the placement, not the actual physical place, and heck yeah, weekly "visits" by nondisabled peers somehow meets criteria for education "to the maximum extent possible" with nondisabled peers as dictated by IDEA, oh and that pesky little blurb in IDEA about noneducational activities to be fully inclusive, ie lunch, well that can be met if you bus "those" kids once a week to eat lunch in the real high school's lunchroom - aka gimps on parade).

I tried my best, but at the same time didn't because it has to be his choice, to get him to opt for going to an adult program run by UCP 5 days a week this year (which, yes, is still incredibly segregationist but at least they recognize him as the competent capable adult he is as opposed to the potted plant the "program" insists he is, darn their hides), but he was pretty adamant about going to his "program" 1 day a week for his related services, which near as I can tell amount to harrassing me about the fact that I refuse to fix the switch mounts that the "program" insisted on using inappropriately as head supports and other and various sundry excursions into areas that are none of their damn educational business.

Someday I will have to let go of my bitterness over this completely immoral segregation and exclusion. They've deprived my son of anything remotely resembling an education, stymied any chance of him being able to forge peer relationships in his community, in *his* school, retaliated when I forced the issue, and perpetuated the fear and ignorance in yet another generation of nondisableds over what a wheelchair really means. I hate to say it, but I find myself hoping the whole lot of people who perpetuate this crap and think they're doing such good work end up nonverbal, nonambulatory, but cognitively intact and treated just the way they have treated my son. Unfortunately, I'm quite sure they'd never recognize the similarities. Ewww... yep, I need to get over this anger someday. It's pretty ugly.

Customer Service or Vendor Convenience

2007-07-17T18:06:00.000-05:00

Ahhh, sigh... just another fun-filled year of dealing w/ people who don't get it. Another letter for posterity:

Dear Ms. Senior Vice President, Sales, Marketing and Customer Service:

We purchased a wheelchair for our son through ABC approximately 5 years ago. I was extremely pleased with not only the initial service we received, but the service we continued to receive right up to the approximate time XYZ purchased ABC. Since then, XYZ has unfortunately fallen to the grossly inadequate standards of customer service that apparently is, in our experience, the industry standard for DME.

My son has severe cerebral palsy and is a very difficult client to maintain a chair for. As an ABC employee, David was probably the most gifted technician we have ever had the pleasure of working with. He understood that “high tone” is an extreme understatement when it comes to Boo's motor issues. He worked creatively to build a wheelchair that not only provided the necessary supports for Boo's limited motor skills but also was able to withstand the constant pressures exerted by his tone. When something broke, I could call David, tell him what we needed, and he would bring it out to the house to perform the repairs on site. Again, truly phenomenal customer service and like nothing we have experienced before or since.

Unfortunately, with XYZ’s purchase of ABC, David’s job duties were apparently changed. Hopefully it was a promotion because he is the best of the best. However, we have been left in the lurch, unable to obtain the simplest of repairs or parts without intolerable delays and, quite frankly, ineptitude.

Somewhere along the line, Boo's records with ABC/XYZ got “lost”. In spite of the fact that this was a highly specialized, custom-built wheelchair, I can no longer simply call XYZ to request a new thoracic pad, or new castors, or new arm pads. My request for a new thoracic pad resulted in an employee of XYZ coming to our home a week later with a tape measure, literally, to measure the pad so a new part could be ordered.

This past March, I called XYZ to request a technician come out to do some maintenance on Boo's chair. I listed specific concerns: Arm rests, a bent head rest support due to Boo's tone, and growth adjustments. Imagine my surprise when I was told someone would have to come out to figure out what parts to order and the chair would probably have to be taken into the shop for the parts to be replaced. I was also informed that XYZ would have to obtain preauthorization from our insurance company (Good Insurance PPO) for the repairs. Now, not only have I been dealing with insurance issues as they specifically relate to my son for the past 18 years, I also have a background in medical billing. I am perfectly aware of my policy requirements and they do not include preauthorization for repairs to existing DME. In spite of the fact that I reverified this information with Good Insurance, Evil Clerical Woman with XYZ was adamant about obtaining preauthorization.

I spent the ensuing 4 months trying to find a vendor who would work on Boo’s chair to no avail. Due to the fact that he will be losing private insurance in approximately 3 years and we want to order a new chair right before that happens, I am not willing to order a new chair now. Vendors do not want to work on a chair they did not build. As Boo's chair is now reaching a critical state in its need for repairs, I called Evil Clerical Woman once again on 7/9/2007, requesting that she order 2 castors and 2 arm rests. I specifically requested that we did not want a technician because quite frankly, the last guy with the tape measure just about sent me around the bend. In order to avoid the bureaucratic nightmare of her insistence in obtaining an unnecessary preauthorization, I gave her my Mastercard number and requested that she send an itemized bill with necessary billing codes so that I could seek reimbursement from Good Insurance directly. She said she would call with a final dollar amount and shipping date. I did not hear back from her.

I called her today to request an update on the status of my order. After placing me on hold for approximately 10 minutes to investigate, during which time I got to listen to a recording extolling the wonderful customer service that XYZ conveys to its customers after the purchase of their DME, she returned to state once again that because Boo's file had been “lost” they didn’t know what size castors or armrests to order and they were checking with the manufacturer for the proper parts. They had not yet heard back from the manufacturer (I’m assuming Sunrise since it is a Zippie GS chair).

Now, I am sorry, but this is a ridiculous way to do business. First of all, it was an extremely customized chair. Sunrise isn’t going to necessarily know the size of the castors or the armrests or the thoracic pads. Secondly, I am perfectly capable of wielding a tape measure with relative accuracy. Thirdly, and most importantly, we are talking about a wheelchair for a young man who has absolutely no other mode of transportation or even a seating system. His wheelchair is by necessity an extension of his body. Yet, we are supposed to wait, a week and a half and counting, while XYZ obtains possibly incorrect parts information from the manufacturer? In what parallel universe does this even remotely qualify as anything close to customer service?

In the space of less than 20 minutes this afternoon, I found an online vendor who had the parts nicely laid out by size and wheelchair manufacturer. I will have two 5 x 1.5-inch castors and two 14-inch armrests here by the end of the week. It was so incredibly simple to do and apparently so beyond the capabilities of staff at XYZ.

In over 16 years now of dealing with various vendors in various states, I have come to the conclusion that because there is a very limited number of technicians qualified to build and maintain a chair for a person as involved as my son, we are assumed to be captive consumers, meaning we will put up with whatever degree of customer “service” we may be lucky enough to receive and be darn grateful for it. Let me assure you that that is not the case. I expect records to be appropriately maintained for future reference, to say nothing of whatever expectations the Joint Commission may impose on a DME vendor. I expect a technician, not a warehouseman with a tape measure, to show up with the appropriate parts within a reasonable amount of time, to perform necessary repairs on site. I am not asking for the chair to be rebuilt on site; I am asking for simple repairs.

I am quite sure that what I consider to be customer service after a DME purchase is not terribly cost-effective for a vendor. However, considering that the cost of Boo's current wheelchair was equivalent to a nicely accessorized mid-size car, I suspect it evens out in the long run. Boo will wear out chairs on a regular basis for at least the next 50 years. Additionally, I am not getting any younger and will eventually have to look into other DME for use in the home to transfer and bathe him. By failing to provide customer service now, XYZ has effectively lost a consumer who is worth quite a bit of future revenue.

I do not expect that this letter will change XYZ’s practices or policies. It sure would be nice, though, if you could take a look at the service ABC was truly providing prior to XYZ's acquisition and perhaps consider returning to customer service as opposed to vendor convenience.

Ashley Treatment violated due process and is discriminatory, and it's not just my opinion anymore

2007-05-26T15:53:00.000-05:00

It is far too late for Ashley, but the Washington Protection and Advocacy System (WPAS) has recently found that the "Ashley Treatment" used to stop her growth violated her right to due process and was discriminatory because the treatment was based on her disability. The report is fabulous. http://www.disabilityrightswa.org/news-1/Investigative%20Report%20Regarding%20the%20Ashley%20Treatment.pdf

I'm disappointed that the parents' atty apparently got off scot-free. In reading the WPAS report, he apparently interpreted state and federal law as well as court precedents regarding sterilization as somehow being on a "sliding scale" based on the degree of disability. The more severe the disability, the less right one has to due process is apparently how he thinks. He's supposed to be some hot shot advocate for parents who have kids w/ DD. Well, I guess he is... the parents' advocate anyway.

Children's Hospital has to revise it's procedures and policies to insure that no sterilization procedures or growth-retardation treatments are performed on minors without a court order. Whoo-hoo. I'm sure they're just shaking in their boots.

While WPAS did find that Ashley was denied due process and discriminated against based on her disability ("If individuals such as Ashley are denied their full constitutional protections to liberty and privacy because of the severity of their disabilities, such a denial would not only be unconstitutional but also in violation of state and federal antidiscrimination laws."), seems like their solution is just to make sure this never happens again. While I can't think of what would be an appropriate consequence for all parties involved in this mutilation, it feels a bit hollow to me that the best they can do is to make sure that due process is followed in the future.

More than anything though, I'm deeply deeply saddened that this report has not to my knowledge been widely reported on in the media, or even on the internet. I do have to give Ashley's parents credit - I found the link on their web site. Unfortunately, they still don't get it, based on their response to the report:

"While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s." http://ashleytreatment.spaces.live.com/mmm2007-05-22_13.05/blog/cns!E25811FD0AF7C45C!1827.entry

Guess they've been listening to their lawyer too much. While I later tried to temper my initial vehement reaction towards Ashley's parents, I have to tell you that the last sentence of the above statement makes me think temperence is not warranted in the slightest. Too damn bad if insuring your child's rights are protected puts a burden on you (wasn't too burdensome for them to consult w/ a sympathetic atty in the first place, was it?). Get over it. And can we remember that Ashley's "medical condition" is in no way "serious" or "grave"? It's called static encephalopathy, meaning it's not changing. There's no deterioration, no life-threatening state here. She was just growing.

Disabled Medical Care

2007-05-23T20:19:00.000-05:00

As in medical care that is disabled, as opposed to medical care *for* people with disabilities.

Boo got sick on Wednesday. OK, stomach flu think I. No fever, didn't look sick, was his usual wickedly funny self, just barfed from time to time. Was fine Thurs. Sick again Friday, but more so. Took him into pediatrician (who has agreed to follow him until Boo marries or doc retires). Lab work was fine across the board but doc was concerned about degree of stomach bloat combined w/ vomiting. Was thinking obstruction or intussusception (my new medical term for the month). Offered to give me script for x-ray of abdomen if symptoms continued, but I was in denial and had convinced myself that this would pass in another 12-24 hours. It didn't, of course, so Sat afternoon I take him in to local ER.

Now, we live in a fringe 'burb of Chicago - certainly not out in the sticks, but in a very blue collar area that is sprinkled with enclaves of abject poverty. Local ER is perfectly capable of dealing w/ drive bys and ODs. More complex medical issues seem to freak them out. When Boo was seizing on a regular basis, ER would stablize, usually w/ my tutoring ("yes, Dr. Smith, that nystagmus means he's still seizing - just because his limbs are still doesn't mean we're done - hit him again with another dose of Ativan" or "no, Dr. Smith, I really don't think we need to do an MRI to rule out a brain tumor (give me a break)... my son has CP, i.e. brain injury, meaning he's more prone to seizures (and if you're thinking brain tumor because of a seizure, you're going to completely flip out when you see his incredibly abnormal MRI, and I just can't deal w/ you right now)"). On the thankfully rare occasions when he kept on seizing, or when there was an identifiable medical issue underlying the seizure, he was transported up to the big city. The single time Boo actually was admitted to local hospital only occurred because I signed in blood, agreeing to stay in hosp with him 24/7, which I do anyway, but nursing staff was freaked out at prospect of having to take care of him. Color me confused. But I digress, kinda....

So, we're in ER, get the abdominal x-ray, and I'm informed he has an obstruction. ER doc was quite definite. Now, one of the reasons I respect the pediatrician is because he is perfectly willing to pass the medical buck if he's not comfortable taking care of something. Much rather deal w/ that than some know-it-all who knows nothing, you know? But... intestinal obstruction? I don't think this is rocket science. I don't know, but you kinda have to wonder about a hospital that is not capable of taking care of a little old obstruction in a person with CP. Does CP really confound the issue that much? Long story short, sparing the details of Boo's GI distress, and to really get to the meat of my rambling, pediatrician said transfer. City hospital said send w/ NG tube in. Boo was apparently roughed up a bit by Nurse Ratchet trying to get an NG tube down in local ER (thank *God* I had gone home to get g-tube adapters). I had insisted that he be dosed w/ Ativan before the procedure, then left to get supplies, leaving hubby in charge. Ratchet apparently was amazingly inept at getting the tube (adult sized, not pediatric) down and when hubby objected, Ratchet had the nerve to tell him that Boo wouldn't remember anything anyway because of the Ativan. Ratchet has no idea how lucky she was I wasn't there. Boo was transported to the city, sans NG tube, where it was determined there was no indication on x-ray for obstruction or intussusception, pediatric NG tube was successfully placed (for about 1.5 seconds before he threw it up again, but at least it made it to the stomach this time), and he was very well cared for by professionals who were not freaked out by his CP.

Now, my point here (there really is one) is what is the *deal*?? Boo is not medically fragile. He has CP. It's a done deal. Not contagious, not progressive, really not horribly relevant in my nonmedical opinion when it comes to dealing w/ something that I bet a lot of folks without CP get. Why do we have to transfer out to major teaching hospitals for care? And it's not just for acute stuff.... try and find a doctor willing to deal with routine medical care for a person with CP (ok, really impressively significant CP, but CP nonetheless).

Case in point: Boo is now 18. I know that city hospital is not going to accept him much longer because it's Children's Hospital. They don't treat adults. I'm going to be very lucky to get his simply fantabulous, genius, best neurologist in the world to continue to see him for much longer. Knowing this "transition" is looming like a big black cloud, I thought I would test the waters of adult medical care with a less critical specialty - orthopedics. Just needed a new script for orthotics. No surgery, no new issues, just maintenance stuff. Now, while I am occasionally prone to exaggeration (shocking, I know), I am not kidding you when I say that I called *six* practices in our general vicinity, including the big ortho practice affiliated with local hosp. Much to my shock and horror, not a single solitary one would see him. No joke, the most common response was "Oh, we don't see patients like that". Like ... what? Patients who need your care? Patients who need orthotics? I was stunned that they pick and choose... or in my raving hypersensitive-to-discrimination mindset, that they *discriminate* against patients who have disabilities? C'mon, give me a break. My son cannot possibly be harder to care for than the woman who has had a quadruple bypass with COPD, arthritis, and peripheral vascular disease who just broke her hip, and possibly has a good dose of dementia developing to top it all off. You can bet your last dime Dr. I-don't-treat-patients-like-that has a whole crop of incredibly complex, medically fragile people he treats, but ... he won't treat a *healthy* 18-year-old who needs a new set of orthotics?

I will say, being the pain in the ass that I am, I did find a willing orthopedist in the same area code finally to not only see him, but who treats him like a person, not a potted plant. The man is gold, and I tell him so every time we see him.

So... is it just accepted practice that folks with disabilities *must* be treated in teaching hospitals, regardless of age, regardless of home community, regardless of treatment needed? Is this an extension of the policy of segregation and exclusion that exists in the educational system (in this state much more so than the other 2 we've lived in)? Do we have little clusters of "handicapped" communities around teaching hospitals so we don't have to spend 2 hours on the Damn Dan Ryan trying to reach medical care? Has Boo lost yet more choice in terms of where he can live because it must be dictated by whether or not a doctor will be willing to treat him? And where the hell did doctors get the right to be "willing" to treat a patient??

The obvious counter argument, one I grudgingly acknowledge and have to deal with, is do we really want an unwilling doc involved in his care? Of course not. First and foremost is quality of care, appropriate care, and for Boo to be treated with respect and dignity. If I have to drive the DDR to get there, so be it. But... I don't understand why supposed professionals are so completely freaked out by a little CP.

Hubby thinks my perception is screwed up, that I somehow don't see Boo as others do (and thank heavens for that!). Boo is Boo. In my mind, he doesn't have "issues". He's got CP, a g-tube, sluggish bowels, fused toe joints, a wicked sense of humor, a smile that illuminates the world, and occasional illnesses, just like the rest of the world. He really *isn't* complicated. He's prone to seizures and dehydration but, again, we're not talking rocket science here. Some folks have asthma and seizures, or dementia and heart disease and reflux. What's the difference?

I had started writing a solution (my version anyway) to the "Ashley treatment" but it's turned into a monster and I just haven't had the emotional stamina (yet) to slog thru to the end, but my core belief about the cause of the "Ashley treatment" and the vast majority of the challenges that are associated with living with a disability is this: By segregating children with disabilities into little "self-contained" classrooms or, if you live in the Land of Lincoln where IDEA is a suggestion and OCR wouldn't know discrimination if it plopped down in their office, nice "self-contained" campuses where the only nondisabled folks are the teachers, we are continuing to perpetuate misunderstanding, fear, and intolerance of differences. Little Johnny never sees a kid w/ a disability growing up because "those kids" don't go to school with him. He doesn't see them in the community because the community is inaccessble, both physically and emotionally (if you've ever had to suffer through the "stares", you know what I mean). His pediatrician doesn't treat "those kids", nor does his dentist. I gotta tell you, Johnny has probably rarely seen Boo in the grocery store because it's a bitch trying to finagle the wheelchair and the shopping cart around the corners, and athetoid movements make for interesting results w/ all those lovely displays that are just too damn close together. Johnny goes on to college, med school, residency, and finally is in a practice that doesn't treat "those kinds of patients". It's a vicious cycle because Johnny's kids are going to lather, rinse, and repeat.

The 2000 census (and I can't cite the exact figure because I haven't gotten my research crap - as well as the rest of my crap - together yet) said something like 80% (don't quote me yet - someday I'll finish my "Alternatives to Ashley" diatribe, you can quote me then) of Americans will at one time or another in their lives either be disabled or live in a household with a person with a disability. 80%. Mind boggling. Unfortunately, I suspect most of that 80% will be too old and tired to realize how completely screwed up our "communities" are in terms of inclusion and acceptance and... well, really, what do we do with our elders? We segregate and exclude in assisted living, extended care facilities, nursing homes. And it continues over and over and over. But somehow, in terms of accessing medical care, being old with a disability will get you in the door. Being young with a disability just doesn't.

Medical care for folks with disabilities is far more crippling than any medical condition could be.

A postscript to the Ashley Treatment

2007-01-12T13:49:00.000-06:00

A couple of thoughts as the uproar dies down. Our opinions are formed by our experience. Ideally by sharing experiences, we can broaden our own views. In some cases I think it's quite possible our views are narrowed by personal experience. I am rigid when it comes to protecting my children from harm, and it is simply my opinion, nothing more, that the Ashley treatment causes harm. I am a warrior mother. I have fought for inclusion, education, appropriate medical treatment, and improvement of my son's quality of life. I have not been successful in many cases. I have made mistakes in my advocacy for my son. But *always*, my intention has been only for his good. I'm well on my way to hell, I'm sure.

First and foremost, I owe Ashley's parents an apology. I sincerely and humbly hope my knee-jerk emotional reaction to the Ashley Treatment can be forgiven. Although I still think this was a misguided, and ultimately futile, effort to improve the quality of life for their entire family, I do not think that it was a decision they made with malice or ill-intent. I reserve my shock and anger for the physicians. I still firmly believe that this is a very dangerous precedent in terms of the rights of people with disabilties to basic, decent treatment.

Those people who have the misfortune to have frequent contact with medical professionals regarding complex issues should be well aware of two important facts. Doctors do not have a crystal ball. They can cite statistics and what's happened before, but in any given case they simply do not know, cannot know, the outcome. My experience: At first neurology appt ever, doc said in one breath that Boo had the worst head MRI he'd ever seen in an infant who survived and that he should only have a little bit of difficulty walking. Don't know about the first part of the statement, but the second part could not have possibly been more wrong. Boo's motor skills are measured in months. His cognitive level cannot be determined because if you can't move, can't talk, and have a vision impairment to boot, standardized IQ tests are out of the question. Finding someone willing to look beyond the wheelchair and drool to investigate cognitive ability has been beyond my resources - physical, emotional, and financial. *I* believe he's got a lot going on but... there are those who say not. No one knows for sure because there is no way to know for sure given current science.

Secondly, a determined parent/patient can find a doctor (or in Ashley's case a group of doctors) who are willing to pursue any number of treatment options. My experience: When a later neuro told me to just live w/ Boo's status seizures because he had CP and "what did I expect", I fired him in a heartbeat and found a neurologist who didn't subscribe to that notion. With medication adjustments, he's now seizure free. What if he had recommended a more unusual method? Or what if I had trusted the live-with-it-guy and Boo subsequently suffered more brain injuy or worse as the result of the seizures? I don't know... which, again, is why I deeply apologize for my criticism of Ashley's parents' actions. We cannot know what we would do in a situation when presented with options by professionals we trust. There currently are no standards, which is why I think in terms of discontinuation of life or surgical alteration in the name of quality of life, there *needs* to some some baseline rules, the supreme one being that everyone has the right to appropriate medically-indicated treatment regardless of ability.

While the furor will die down and Ashley will soon become forgotten to most, I hope that at some level in the medical community, disability community, national community it will provoke thoughtful discussion about what we're doing when we heroically save a premature infant's life or a shockingly injured adult, place feeding tubes, remove feeding tubes, remove organs, and are we all willing to deal with the consequences. Can we, or will we, provide support to families and individuals after the fact? Do we value human life because it is there? Do we value it only if it meets certain criteria? Do we not apply equal rights to all? Is there a triage for who gets to have what rights? Can we tolerate a different standard of care based on ability?

Don't misunderstand me. While one anonymous responder mistook me for a "hyper-religious neo-con" (which I have to admit gave me the best belly laugh I've had in days), I am actually far more a "raving lunatic liberal" as my husband likes to call me. But I've also been shaped by my experience - where there is life, there is hope but more importantly, there is value.

The world has gone completely nuts

2007-01-04T21:43:00.000-06:00

http://ashleytreatment.spaces.live.com/blog

For an especially sickening example of the abuse of children with disabilities, in this case sanctioned by a major children's hospital, and abuse actually performed by physicans, check out the above.

In essence, parents of a 9 y/o girl w/ "static encephalopathy" (permanent, unchanging brain damage, aka cerebral palsy in our home) have determined in their infinite *stupidity* that it was somehow in their daughter's best interest to perform a hysterectomy and removal of breast tissue along w/ hormone treatment to prevent her from growing to her full adult height (estimated at 5'6"). Since she will never need her uterus or breasts, no big deal to remove them. Since caring for a 5'6" adult w/ severe disabilities would be difficult (for who, one has to wonder), no big deal to perform radical surgery so the parents can keep their "pillow angel". I kid you not, that is what they call her... their "pillow angel". Pass the barf bags.

Using their logic, why not just perform quadruple amputations? I mean, really, she's not going to use her arms or legs, and if caregivers are not diligent when she becomes larger (which I guess she won't now) she could potentially have skin breakdown opening the door to life-threatening infections so... why not just get rid of that extra weight and bother now???

Holy crap - I was appalled, insulted, and outraged when a nutritionist suggested we limit Boo's caloric intake at the ripe old age of 6 so that he wouldn't get too big as an adult. Needless to say, she was fired instantly and we have continued to feed him so that he can be *healthy*. I guess I should be thankful that castration wasn't recommended.

Don't get me wrong - caring for a 5' something, 110+ pound, adult with physical disabilities is no walk in the park. I've got the trashed lumbar disks to prove that. But I am truly just sick to my stomach to imagine that it's acceptable medical practice in any case to surgically stunt a child's growth. This opens doors that we cannot possibly go through if we are going to be a pro-life, christian, family oriented country (said tongue in cheek). OTOH, perhaps Terry Schiavo's death was the death knell of the rights of all people with disabilities in this country to any kind of quality of life. How far away are we from euthanizing infants routinely - I know it already is happening on a thankfully rare yet all too frequent basis - based on CT scans, EEGs, and some nebulous and completely subjective standard of what their "quality of life" may be? Who has the wisdom to determine what constitutes "quality of life"? In fact, who has the wisdom to predict what any infant may or may not be able to do as an adult?

"Ashley's" parents need to be charged with child abuse. Her "physicians" need to be locked up for life for mutiliation. I am just revolted.

Edited to add... Some excellent opinions out there, but I gotta love Cory Silverberg's the best:

"If you believe in basic human rights, you have to extend them to all humans. You can’t say that you believe in human rights, but not for people who can’t articulate their value. You can’t say that you believe in human rights but not for people who would be better off dead. If you’re able to tell yourself that in this one case, it was okay for parents to mutilate their daughter with absolutely no cause, and no medical argument, then you need to rethink your definition of basic human rights. " http://sexuality.about.com/b/a/257889.htm

And I have to ask, where is the disability community? Why is there not a huge uproar over the fact that the *only* reason this was allowed to happen to Ashley is because she has a disability?

The time has come...

2006-06-15T14:59:00.000-05:00

It's ridiculous the things I fight. Lift for the van, g-tube. Heck, I even avoided a wheelchair for Boo as long as possible. Today it's a lift for the home. I'm beyond devastated - isn't that ridiculous? Somehow it's yet another acknowledgement of ... I don't know, his disability? My inadequacy?

So, the back is out, badly. Hubby has been out of town for 2 weeks and I just don't have the sheer strength to continue to life Boo in and out of bed anymore. I'm in incredible pain right now, which is probably part of why I'm sobbing like a sissy over having to order a lift, LOL. Somehow, I just feel like it's letting him down. It's so impersonal, so institutional, so unmotherly to have to use an appliance... in my extremely warped mind, it's somehow a sign of me being less caring, though a more rational person would say it's me being more caring by taking care of myself so I can take care of him, but that's just bullshit.

Maybe it's a pity party, maybe it's PMS... maybe just another wave of grief washing over me for my son... I don't know. But the order is in the works and soon my boy will be mechanically lifted into and out of bed, and it sucks.

Lowered expectations... how low can we go

2006-05-30T16:19:00.000-05:00

I've given up on Boo getting an education. Let's face it, kids w/ severe disabilities in IL are second class citizens at best. You can only pound your head so much against the immovable wall that is special noneducation in this state before you figure out that something's gotta give - and if it isn't your determination to obtain FAPE in LRE sometime in your child's life, then it will be your very sanity.

So... son educated in admin bldg? Whatever. Has the privilege of eating a whole 3 days a week in a real high school? Aren't we just too lucky. Classroom has to be moved to a new site because admin bldg is moving to a HS, which is moving to a brand new HS that ... shock of all time, doesn't have "room" for disabled kids? Blahblahblah. So my son, the soon-to-be senior, gets the *honor* of actually going to a real school next year. Of course, said school is a junior high, in a community 20 miles away, because no one really has room for "those kids". He will once again get the privilege of being bused to a HS 3 days a week, just to make sure he gets a taste of what he is being denied. Like I said, second class citizens.

His IEP isn't followed, his aug. com. device has been out of order more than in, and pretty much there's not a chance in hell of anything meaningful ever coming about as the result of his so-called "education". Screw 'em, we'll deal with it ourselves.

But apparently, it is simply too much to expect that basic safety can be followed. My son arrived home today with a broken wheelchair because some lazy/incompetant/just-plain-stupid women couldn't be bothered to swing out the thoracic pad. This isn't rocket science here - the thoracic pad holds him upright in his chair. It swings out for ease of putting him in and out. Genius nurse informed me that Mrs. Clark "never" does that, but she wasn't there today. It was another pair of equally dimwitted women who put him in his chair so hard that they literally ripped the bolts out of the pad. Genius nurse and dimwitted pair apparently thought it was ok to send him home w/ the pad in his backpack and the raw bolts digging into his ribs. Why the hell genius nurse didn't insist that appropriate procedures be followed is beyond me... besides the fact that Mrs. Clark does a damn good job of intimidating the hell out of the nurses. I guess Genius is too cowed now to do her job at all. Wonderful.

I'm beyond livid. Means Boo will miss the last week of school (though truth be told, he's probably safer at home at this rate). I have left a message at school advising them that I am available to train staff since they are obviously incapable of basic transferring of my son to/from his wheelchair.

I cannot lower my expectations any more. They *must* keep him safe, must transfer him appropriately, must use the wheelchair as it was intended.

But, OTOH, being the cynic that I am, perhaps this is the way they will get him out of the school system at 18 instead of 21... graduation by endangerment, when it becomes too unsafe for me to allow him to attend. Certainly within the realm of possible when it comes to noneducation in IL.

Don't Read in Our Neighborhood

2006-05-20T17:58:00.000-05:00

So, how hard can it be to get a library card? Apparently... very.

First off, Ty directed us to the library he usually goes to. May I just say that the other half really does live differently than us working class slobs? OMG, never have I seen a library like this. A "Seattles Best" cafe right inside the doorway. Then a huge reception area. The adult books were in a lovely little library (in every sense of the word, complete with, I kid you not, a fireplace... burning). The kids section was bigger than our entire blue collar library - at least 10 computers, lovely seating areas all over the place, a tree house, and books from here to Sunday. It was beautiful. Another secluded little area of.. I don't know, high brow audio, video, etc. The decor blew my mind. Cherry wood, ceramic tile, just really first class.

OK, so... we live in BCville, Ty's living obviously near some very affluent folks. They guard their domain diligently. I tried to explain Ty's living situation, but the more I got into it, the madder I got. I shoudn't have to explain the intimate details of Ty's difficulties w/ a library clerk. He lives here, we live there, we are his guardians, can he have a card? No. Aside from the fact that we were at the wrong library (litally, wrong side of the tracks), we have to have a letter stating that he is a resident at the institution. Sigh. Once he gets a card at the right library, he can then apply for one at posh library, but they will still require letter.

Called the "right" library - they also require a letter, along with our ID, etc. For a library card, for a 15 y/o, in a state where a whopping 31% of 8th-grade students can actually read at an 8th grade level. Yeah, I get tax districts and library districts and what's mine is mine and what's your's is your's... but we're talking a highly at risk kiddo here who actually wants to read. The gate keepers need to back off. I accept all responsibility - give him a card already.

Not one U.S. state can boast that a majority of the 8th-graders in its public schools last year had achieved grade-level proficiency or better in either reading or math.How much money did your state spend per pupil while failing to adequately educate in reading and math the majority of students in its public schools? The answers are in the chart below.

http://www.humaneventsonline.com/article.php?id=13458 .

To top off the visit to Posh Library, an elderly man approached us to ask why Boo is in a wheelchair. Now I have absolutely no problem w/ this kind of stuff. Education is education and it beats the hell out of the stares or, more often, the very carefully averted gazes. But this poor man's son has been diagnosed with MS, and Dad obviously doesn't understand the implications. I did explain that Boo has cerebral palsy, that it's a one shot deal: Brain injury = impaired motor function. Not progressive, not genetic, not an "illness". He thought MS was the same and I just didn't think it was my place to educate him. He then stated that his son is also schizophrenic, in a nursing home, and cannot get equipment because Medicaid won't pay... I felt guilty, but with Ty and Boo standing/sitting there, I just couldn't commisserate too much. But I felt the man's desperation and desire for connection w/ someone who was in a similar place. I told him that it was a long difficult road, that he had my best wishes. What a cop out on my part.

Anyway, hopefully with appropriate letter in hand we will get Ty a library card on our next visit. Other than that, the visit went pretty well. He's still inappropriately affectionate, especially for a 15 y/o, still occasionally inappropriate in general interactions, but he is very polite in restaurants, LOL. It was a good visit. We ate, then went to a park for a couple of hours and just played.

I miss this Ty.

Just an observation

2006-01-30T17:55:00.000-06:00

Apparently, in an effort to avoid anything even approaching an education for older teens with severe disabilities, the practice in my particular school district from hell (actually, it's a "special education co-operative" from hell) is to shift attention away from all things academic and vocational starting in the junior year of high school. Instead, we must focus on whether Boo needs a haircut, or if his hand splints are wearing out, or if he's wearing a coat in 60 degree weather (now mind, he can't sweat because of his medications, he's sitting in a flipping black vinyl wheelchair with massive supports, and he's got solid plastic splints on his feet and hands). Because, according to the genius who "teaches" my son, if you don't wear a coat, the cold weather will make you sick. My eye, I say - and I told her too, along w/ documentation from NIAID advising that... and I know this is going to shock a lot of you.... viruses actually cause most illnesses, not the weather. GASP!

I am extremely pleased to announce that my nonverbal, visually impaired, quadriplegic son calls ahead if he's going to be late to an appointment, according to his rocket scientist of a classroom teacher. Now, I'd ***really*** like to see that. In fact, he'd really like to see that. But what the hell, we had a good chuckle over it anyway.

So in response to the latest not so subtle inquiry as to the "timeline" on when his new foot braces will be in (at $1650 a pop, for those of you unfamiliar w/ the joys of specialized equipment for the disabled), I have invited the inquirer to contact the school district representative to arrange for provision of any supplies that are necessary for him to receive FAPE in LRE (like that will ever happen in this godforsaken state, but hey... IDEA actually *does* say, among so many other things that ISBE and co-op from hell choose to ignore, that any medical equipment or services that are required for FAPE must be at SD expense). Of course, inquirer won't do it, and I'm solidifying my rep as a bitch on wheels, but... tough. The splints and braces will get here when they get here.

I think the next IEP mtg, I'm just going to given SD and co-op the number to DCFS and advise them that any communications that do not have a direct bearing on Boo's actual education may be relayed to them, 'cuz I'm about fed up with this meddling in areas that are completely out of their purview... all the while, they're *still* not doing a damn thing to educate my kid.

I know, I need to request an IEP mtg and tell them to get a grip... but honestly, I am so deeply infuriated over this crap I am afraid I will not be able to contain myself... which would make me a completely ineffective advocate.

Idiots.

Static Cats

2005-12-21T18:24:00.000-06:00

Who knew?

I woke up in the middle of the night last week and as I was getting out of bed I noticed there was an intermittent greenish glow coming from the blanket. Being foggy still half asleep, the thought briefly crossed my mind that I must've been accidentally sleeping with the "flickie" and its buttons got pressed, thus lighting up in the dark.

I walked into my son's room to deal w/ beeping medical equipment. With its wall to wall linoleum it is, let me tell you, a very fast way to wake up in the middle of the night. Talk about cold feet!

So as I climb back into my warm bed, being quite a bit more lucid and alert, I saw that the glows were actually *sparks* of static electricity. We have this obnoxious (but extremely warm) blanket my dh purchased in Korea in his young single sailor days - two tigers posing, really pretty tacky. Because it's kind of furry, it's apparently collecting static electricity. Throw in the three cats who like to lounge on our bed all hours of the day and night... well, we might be able to power a small city with all this electricity. I've never actually seen it *spark* though. Very bright green flashes of light, even brighter than what you see when you chew wintergreen Lifesavers in a closet.

Which I guess brings me around to the poor cats. I just don't know what to do for them. Figaro doesn't seem to have static too bad, but then he's recovering from a lovely case of alopecia (he's much cuter than he sounds, and he's 12 - he's allowed to go bald!). Elsie has this amazingly soft fur, almost cashmere, that doesn't collect the charges too much either. But Soda.... poor Soda. She's finally figured out how to purr, and that purring is a nice thing, and that getting petted and scratched is even nicer because it feels good and it makes her purr.... but she is one huge ball of static. I can't touch her without us both getting zapped. Sigh... by the time the winter is over, she's not going to be loving me much.

I'm thinking about trying Diva's detangler on her, though I'm not sure it actually addresses static. Or maybe I should just rub Soda with a dryer sheet.

I wonder why static is so bad this year....

How much pressure does it take to crack a warrior mom's shell?

2005-12-09T16:46:00.000-06:00

Honestly. The pressure is coming from all sides and I've just about had it with all of this crap.

Total bullshit "worksheet" came home w/ Boo today from school. It's priceless.

Activity 4-1

Good Grooming

You will want to look your best on your new job. It shows respect for your employer. Part of looking your best is good grooming. That means being clean, neat, and having good taste in the way you dress. It shows in your hair style and clothing, too. Rate your grooming on the chart below.

I can't get the damn tab button to work, so I'll just share the truly impressive responses that some asshole filled out *for* Boo, because he can't fill them out himself.

His hair is dirty and needs trimming.

His face is dirty and has beard stubble.

His teeth are not brushed today and he has bad breath.

Whoopee, his hands were clean, but his nails are too long.

He stoops or slouches. Now there's a fucking brilliant observation about an almost 17 y/o teenage boy, who has spastic quad to boot.

His clothes are correct for work and clean, but they're wrinkled.

His shoes are correct for work, clean and polished (gee, d'ya think that might be because he's in a wheelchair?).

He gets a daily bath or shower, his underarms are dry and clean (and how exactly do they know this?), but he needs shaving.

Well, obviously DCFS needs to be called, immediately. No way will this child ever obtain a job, because his *grooming* so bloody awful.

OR... could it be because he's been locked away in an administration building for the past two years because we certainly can't let the crippled kids actually go to a school. He has no opportunity to interact w/ anyone who *doesn't* treat him like a cripple (besides his family). School staff's job is to cultivate a disabled mentality - hell, they had him drinking out of a *sippy* cup last year because they were oh so worried he was going to choke. Well, sweet Mary, why don't you get some training and figure out how to feed him the right way, you idiots. So, he has absolutely no concept of how to deal w/ nondisabled people unless they're feeding him, changing his diaper, or completing bullshit questionnaires for him.

OR... could it be because he can't communicate? Augmentative communication BS for... 15 years now? Still no way to communicate. They'll send the device de jour home, but won't train us on how to program it so his communication here at home using it is limited to school choices. Not terribly effective. We generally don't have math and social science here at home on the weekends. Probably another reason to call in CPS.

OR... could it be because he can't see?

OR... could it be because he has no functional movement? Pretty hard to get a job when you can't move, see, walk, talk. Dumbshits.

Why the *hell* is he going thru this "vocational training" when it has absolutely no fucking bearing on him whatsoever? And then they send jewels like this home? If they have a problem with his grooming, just tell me. I'll be happy to explain to them that he doesn't *want* to be shaved, and that's his perogative. It's called self determination, which I know is a foreign fucking concept to these people who are trying their hardest to indoctrinate him so that he'll be a good little "client" for the nonexistant adult services in this state. Bad breath? Could be because he vomits on a daily basis and unless I can brush his esophagus... oh well. Not much I can do. Untrimmed hair? Have they taken a look at "normal" HS juniors lately? Sheesh - it's not like it's hanging in his eyes. Again, self determination going on here folks. Nails too long? So sorry, I missed his weekly trim. Wrinkled clothes? Bite me. Face dirty? Well maybe whoever fed him at lunch should have done something about that, hunh? Or hey, maybe whoever passed out this shit-for-brains work sheet should've take a swipe at his face with a wet wipe.

This from the same rocket scientists that brought us the infamous "send a coat because he will get sick if he gets cold" note. My response to that was that it was my understanding (backed by a nice little pamphlet from the National Institute of Allergy and Infectious Disease) that viruses or bacteria actually cause illness, not lack of a coat (and this woman is "educating" my son???), that Boo has a high metabolism that causes him to run warm, sits in a black vinyl wheelchair with extra supports and no ventilation, has dysautomnomia which means his CNS is so fucked up that he can't moderate his temperature... and by the way, since he missed I think a whopping 2 days of school last year, and has never had pneumonia, I obviously have a clue sitting around here somewhere, so back *off*.

Anyway, pressure #1.

Pressure #2, yet another note from school telling me his foot braces are getting too small. I disagree, but what do I know. My respose will be to invite them to feel free to obtain new brace at school expense, for use at school.

Pressure #3, bill collectors. We spent a third of our income (and we're talking blue collar here - it's not like we're rolling in dough - how can you be w/ two severely disabled kids?) last year on medical bills - that's out of pocket, after alleged insurance. Now this year we've only spent a fourth of our income, which means we've been able to do extravagant things like ... buy our kids some clothing. If they were calling because our yacht payment was late - that's one thing. This latest one really pissed me off. An *automated* call from some asshole attorney, after business hours, and they only gave me the phone # once - like I always pick up the phone w/ a pad of paper and a pen in hand. Thank goodness for caller ID. But I call back and it's after business hours. 2 minutes after their irritating automated call. So I call today - get... now count them... *4* automated messages. I just kept punching 0, getting the operator again and again, and told her I'm not leaving a message - did that last night, no return call today. Some bill collector. Finally get some superior smug wench... that's ok - I'm not sending *them* the check, I'll send it to the ambulance company the bill is for.

Ongoing pressures... layed the linoleum in Boo's room last weekend. Looks like shit. But that probably is good because it matches the shit job we did on the drywall (four walls and ceiling) after the infamous roof leak/carpenter ant/mold fiasco of 2004. Is it too much to ask that one thing turn out right? Just one.

House looks like crap, I've worked 12 days straight, and my father comes on Sunday.

My chest pains are back and I alternate between praying some massive myocardial infarction will just put me out of my misery and having panic attacks over the thought of leaving my kids before they're grown. OTOH, I'm worth a *hell* of a lot more money dead- dh would be set for life. Plus I just fucking *hate* doctors. They can never leave well enough alone, just have to poke and prod until they find something to screw with. And it's always on their damn schedule. Sorry, doc, I really can't take a day or ten off of work while you run "tests". Not like I'd let you do any major intervention anyway.

I'm just tired of it all. It's not going to get better. There are expectations and pressures. My insane son has decided he wants to come home for Christmas and quite frankly I just don't want him here. Too much PTSD from last year's Christmas from Hell. But of course I can't tell the staff at the institution he's in that I don't want him here, because then I'm uncooperative and noncompliant. So he gets to come home and ruin it for the rest of the kids.

Waiting for next pressure to arrive. I figure it's probably the van. Or the washing machine. Or Fridge. Think those are about the only working appliances left that can blow (furnace already did - had to get that fixed, no choice). Or, more likely, one or both of the older boys will end up in the hospital, because after all, we *almost* have all of the old bills paid off.

Never expect anything good, or hope for it, or even dream about it. You'll just get cut off at the knees.

Are we having fun yet?

2005-11-17T17:54:00.000-06:00

I think the Peter Principle must apply to life in general. We have "streamlined" and "cost effected" ourselves into complete incompetance. Case in point.... how many idiots does it take to refill and deliver a company mandated mail-order prescription? Four and counting, 'cuz the meds still aren't here.

And is it any wonder that I'm getting crabbier and crabbier? I actually screamed at Alfredo on the phone today - I mean vein bulging eye popping *screamed*. I need to start drinking more.

Dear Sir or Madam:

I have now placed two orders with ABC for Boo’s medications. I have yet to receive an appropriate order on the first try. Boo has epilepsy and requires a triple medication combination in order to keep them under control. He has a history of status epilepticus which can be life-threatening. Even on triple therapy, he has breakthrough seizures.

The original prescriptions submitted to ABC called for Topamax 100 mg tablets at a dose of 2 tablets twice a day be dispensed. ABC staff took it upon themselves to request that the physician change that prescription to 200 mg tablets, 1 tablet twice a day. There is a very specific reason for why we use 100 mg tablets and why the original prescription was written that way. Had ABC staff bothered to contact us, we could have explained it. Instead, they made an assumption and sent us the improper dose. While we ultimately did receive the Topamax 100 mg tablets, the 3-month supply of 200 mg tablets, worth $814.51, were returned to ABC for destruction.

In late October I requested refills on medications for two of my sons. Weeburt's medication arrived in a timely fashion. Boo's did not. However, I am aware that there have been production problems with Carbatrol, so I incorrectly assumed that his order would arrive shortly.

On November 15, I called ABC to inquire about the status of Boo’s order. Ann gave me the XYZ shipping number and a toll-free number to call. She also advised me that according to XYZ’s web site, the package was at a sort facility.

Kathy at XYZ confirmed that the package had been picked up in Florida on November 1, delivered to a sort facility in Ohio on November 2, where it apparently remains. She stated she would call me back with its status. When she called me back, she advised me that XYZ apparently had an open, empty box in an unclaimed item department. She also stated that there were no lose medications. According to Kathy, no medications had been returned to ABC. I asked why XYZ had not notified their client, ABC, about XYZ’s failure to deliver the package. She advised me that XYZ does not have the manpower to do so. A copy of XYZ’s tracking status for this order is enclosed. I suspect I could check on the order’s status in a year and it will still be in a sort facility in Ohio.

I called ABC back and spoke with Maria. I advised her of the loss of medications and requested that they be resent. Maria informed me that ABC would have to contact the physician to get a new prescription, since the refill had been used up by the lost order. I expressed my strong disagreement with this. If an order is not delivered, then the refill has not been used. However, Maria stated that the order would be ready for shipment in 2-3 days. As my son runs out of medications on November 20, I had no choice but to accept this.

Late on November 15, I received another call from ABC. This time Angela advised me that the order was in process and I should check back at the end of the week as to its status. If it wasn’t ready, ABC would authorize a 5-day refill through our local pharmacy (of course, once again contacting my son’s physician to get him to call in a prescription). She offered to call me with an update on November 17. I told her not to bother, that I had quite had my fill of ABC and that I would make the necessary arrangements to insure my son gets his medications.

On November 17, Angela called to inquire if we had yet received the missing order. I advised her that it was quite impossible for me to receive an order when the empty box that the order was shipped in is still sitting in a sort facility in Ohio. She advised me that the “new” prescription was being processed, but that since we will be running out of medications, she could contact our physician to phone in a refill to a local pharmacy, and authorize our “reimbursement” from ABC. I once again told her that that was not necessary.

Shortly after this phone call, I realized that the $150 copay charge for medications that were never received was still on our credit card. I called ABC to have this charge credited. Ultimately I spoke with a supervisor, Alfredo, who advised me that in reviewing the information on this refill, it appeared that the medications were returned to ABC on November 11, and were destroyed. A notation was made that our address needed to be verified. We received no calls, no correspondence. Instead, ABC simply received over $2000 worth of medications, not in their original shipping container since that is still sitting in the sort facility in Ohio, and destroyed them. I was yet again informed by Alfredo that a new prescription for these medications was “being processed”, a phrase that has absolutely no meaning to me at this point. It could mean my son might get his life saving medications sometime next year. Or not. I advised Alfredo that the order needed to be canceled, the copay removed from our credit card, and I would handle securing my son’s medications until I have some level of confidence that ABC staff has the slightest clue of how to effectively and correctly fill, ship, and confirm delivery of prescription medications.

On November 15, I sent an e-mail to ABC Customer Service specifically requesting information about the checks and balances ABC has in place to insure that medications are delivered in an appropriate and timely manner. Instead of receiving an answer, I received notification that the reshipment in question was still in process as of November 15, and then a very lovely public relations spiel about the ease of ordering and tracking shipments on the ABC web site. A copy of this enlightening response is enclosed.

I would like the following questions directly answered:

1. Why, when I called ABC on November 15, did Ann not inform me of the fact that the order in question had actually been returned to ABC on November 11 and destroyed on that date? Why was I instead given the XYZ shipping number and XYZ’s toll-free number so that I could track down the missing shipment?

2. What system is in place to confirm delivery of prescription medications?

3. Why wasn’t I notified that Boo's medications had been returned to ABC? Our correct phone number and mailing address is on file. What could possibly be the rationale of destroying three months worth of medications without notifying your subscriber? Boo hasn’t suddenly been cured of life threatening epilepsy just because ABC’s delivery provider can’t manage to keep a box intact from point of origin to point of delivery.

4. Why was a new prescription required when the last refill on the original prescription had not in fact been filled? I believe the purpose of refills is to insure that the patient does not receive more medication than is necessary. ABC not only had confirmation from XYZ that the package had never been delivered, but also had documentation that the refill had been destroyed by ABC. Aside from unnecessarily bothering our physician requesting unnecessary prescriptions, this “procedure” delayed any chance of my son receiving his refills in a timely manner.

5. In connection with #4, why wasn’t an order immediately processed on November 15 when it was abundantly clear that the medications never arrived here?

6. Why did Angela call me on November 17 to ask if I had received medications that ABC had actually destroyed on November 11?

7. So far, in the space of approximately four months, ABC has destroyed just shy of $3000 worth of medications for my son alone. How is this cost efficient?

8. Under what circumstances does ABC initiate contact with their clients?

9. What assurance can I be given that future orders through ABC will not be grossly mishandled, and that my son will in fact be able to depend on ABC’s service? Is it simply safer for me to obtain a second and third job so that I can pay full retail cost of his medications?

I will not be placing further orders with ABC for Boo until these questions are answered and I am assured that someone associated with your company grasps the literally vital nature of the service you allege to provide. I have also advised my husband’s company of our difficulties, and of ABC’s inability to, in our case at least, act in a fiscally responsible nature. I expect to see a credit for our $150 copay on our next credit card statement.

I look forward to your response.

How to find my voice

2005-09-30T18:57:00.000-05:00

So... a long gap here. Don't know where the hell the summer went, but I'm told that it's a sign of old age. S'okay, I can deal w/ it.

Feeling stagnant and atrophied, mentally. Started working again this week - one great company and one company who should be banned from having anything to do w/ confidential patient information because they simply are clueless. Quit the latter. First time I've ever actually quit a job because I wanted to, not because I was moving or going back to school, or giving birth. Kind of an empowering feeling, especially since I told them that under the shitty training and QA circumstances (of course, put in more diplomatic terms because I still am, unfortunately, at heart a conformist, dammit), it was impossible for me to do my job in anything approaching a professional manner.

House is falling apart around me. Not that I ever lived in a Better Homes & Gardens joint in the first place, but trying to jump start my brain (that seems to consist entirely of dysfunctional neurons that can't fire in the right order any more) so that I can do my new job well is leaving me both brain and body dead by 5 pm. Perhaps I ought to blow off the collection agencies (you know, all those medical bills just don't ever seem to go away - and what's w/ collectors copping an attitude? I *always* pay the bills - just not always in the same year they're created... but we not talking about my bloody Porche payment, are we. We're talking the orthopedic surgery, the psych admissions, the damned pharmacy bills, laboratory, physician... holy shit, it's just amazing how many people have their fingers in there, and how damned *pissy* collectors can get about a $75 bill... like I should've somehow known in my young dumb and single days that I was gonna have two severely disabled kids and I needed to be squirreling away every damn cent instead of going out on a nightly basis and dancing on every table in every bar in the city of St. Louis... )... anyway... where was I? Oh yeah - first paycheck, screw the collectors, and buy a dishwasher.

Yep, I think that's what I need to do.

And I need to find my voice, that internal voice that used to be me, that got lost in the middle of diapers and g-tubes and dishes and laundry and IEP mtgs and doctor appointments. I used to be a person. I used to be kind of an interesting person, I think. I don't know how I lost her, or when... but I'd sure like to find her again.

Do you think it's possible to recover from almost two whole decades of motherhood - and how the hell did the time pass so fast? Don't get me wrong - I adore the kids, know that as much of a screw up as I am as a mother, I was absolutely meant to be *these* kids' mother... they're great people, different, unique, and I love them intensely. I just feel a bit like a shell of my former self and I wonder if the atrophy is permanent.

Common decency is extinct

2005-06-21T05:17:00.000-05:00

I simply do not understand people. What happened to common decency, to doing your job? Making a committment and then sticking to it?

I have to think that a lot of it is because J's "disabled". So it just doesnt matter, really. I mean, he's just a kid in a wheelchair, who the hell cares if he goes to school, if he's let down.

Once again, no nurse. Incompetant nursing agency has been bugging me since *April* about hours and dates of summer school. Duhhh, call the flipping school already. After the nightmare of 2003/2004, I am *not* getting involved in this again. Deal w/ the school. Apparently that was too complicated a statement.

Good Nurse showed up yesterday morning - per Incompetant Agency. Of course, school starts *today*. I felt so bad... GN is a wonderful woman who sees my son as the person he is, not as a "case". So she lost a day's salary because of IA. She will be back today, and Thursday. But no nurse on Wednesdays.

So, I want to know how difficult it is to actually call me and tell me they have no one? Is this rocket science here? Or does it just not matter because... well, he's just a crippled kid? No big deal if he misses four days of summer school. Is it wanting to keep the contract? Like that's going to help IA's case by simply ignoring the fact they are not providing coverage? They *know* the crap we went thru last year, they *know* I'm not going to tolerate this. I am the warrior mother from Hell - *I* can find a nurse, but I need to know.

I'm so pissed, but more so I'm just so upset for my kid. He loves summer school. Let's get serious, he can't go to camp, he can't participate in any community rec activities... this is his sole diversion during the summer. And because it just doesn't flipping matter to IA, he misses days.

I sincerely hope that all the people who have short changed him, who have treated him as an inconvenience, who have ignored the *person* sitting in the wheelchair... well, I believe that what goes around, comes around, and since 80% of the US population will at one time either be disabled or live w/ a family member who is disabled... I sincerely hope that these careless people will someday suffer a fraction of the discrimination, neglect, and disregard that they have dealt my son, and I hope they remember all the people w/ disabilities that *they* screwed over.

Unfortunately, I fear they're just too stupid to make the connection.

Junk mail

2005-05-26T19:51:00.000-05:00

As much as I despise spam, I'll take it any day over the mountains of crap that are delivered in rain, sleet, and snow by the USPS. It's just getting worse and worse. I'm not an organized person. It seems to be beyond my ability to travel from mailbox to garbage can without getting distracted. Which means we have a not so thin layer of junk mail spread out over our living room. It never ends - even after a manic cleaning rampage, it just comes right back.

What is our real estate agent thinking? We buy the house, and six months later he starts sending us post cards detailing his wonderful skills at selling houses. Hunh??? We just *got* here. Is he trying to tell us something? It's been seven years now, and still w/ the postcards. I'm wondering if by chance he is not a believer in full disclosure (should I quick check the rafters for termites?). And you can be *darn* sure that pigs will be flying before I call him to sell the money pit, if we ever do decide to pack up and leave this gawdforsaken state - he's totally pissed me off w/ his postcards.

Ditto the auto dealer. Just because we finally had to bite the bullet and buy a van, does *not* mean that we will be doing it again anytime in the near future. In fact, it makes the likelihood of that happening significantly (and I mean significantly) lower.

Credit card companies - do they even screen who they send apps to? We must get 10 a week. Anyone who would give us credit at this stage in our lives needs serious psychological intervention. I ought to just start filling them all out and send them back in the *postage paid* envelopes. Maybe that'll stop it.

Is it really necessary for American Airlines to send all that crap about hubby's mileage? *I* don't care, and he doesn't even know where the mailbox *is* so how could he possibly read it.

Do I really need the company's healthy living magazine? As far as I'm concerned, there are two food groups - nicotine and caffeine. Don't even think about telling me about the benefits of exercise, and I've been a tanning fool for 30 years... I'm not stopping now.

EOB's. GAWD, I hate insurance companies. First they screw up the processing and send you the notice. Then they will reprocess the claim (after you've spent a week on the phone trying to talk to a real live person, because just between you and me the pre-recorded junk they're using these days as an excuse for customer service just doesn't understand "You people are bloody morons - it's a $250 deductible per calendar *year*, not *day*") and they send you the notice. Every time they look at the darn claim, they send you a piece of paper. So you have to sort thru, audit, circle in bright red ink (I usually add profanities in writing just because then I can control myself should I actually speak to a human being a week from next Thursday), and file. I literally have *four* milk crates filled with medical bills and EOB's - and those are just the ones that are taken care of.

IMHO, medical bills fall under the category of junk mail. I mean, really - I only need to be told once. I totally get I owe you the equivalent of the defense budget. You will be paid - I just can't tell you what decade it will happen. In the meantime the bills are (sometimes) neatly filed away - sometimes by chronological order and when that gets too depressing, they're filed by dollar amount (smallest to largest). I don't need reminders.

I don't care about the village chamber of commerce, the fireman's auxiliary, the library's schedule of events. If I wanted digital cable or satellite TV, I'd have ordered it off of one of the first 5,000 ads they sent me. I do not need repeated notices of privacy from various entities (especially since they send the same bloody notice via e-mail). I'm sorry that kids are missing, but I'm a hermit and wouldn't know if they were living next door - sending me the blue and white postcards isn't helping find them, unless of course the mailman reads my mail. I don't want to join Sam's, I don't need a good deal on a snow blower. I don't care about the Penny Saver - can pick that up at 7-11 any old day. Don't care about McD's specials or Burger King's new sandwiches or KFC's great deals - tho' I must admit my kids do, and I really want to thank the advertisers for that special hell. And exactly how many calendars does one household need? I get one from a realtor (not our postcard loving fellow), a pizza joint, the bank, the mechanic. There's a limited scope of usefulness here - it's not like I can save them for next year. And while I love the Bears, I truly honestly don't need their season schedule on a fridge magnet - really.

Just because I ordered one item online 15 years ago does not mean that I want to receive catalogs from that company until the day I die. Nor do I need catalogs from companies that sell similar items - and may the fleas from a thousand camels infest the armpits of the clerical dweeb (or more likely CEO) who is selling my impoverished name to vendors of similar wares. The catalogs that *really* piss me off are from the companies that filled orders for the bozo that nabbed our credit card number a couple of years ago. Especially when said companies *knew* they got our info via this fraudulent cretin.

I hate magazines as well. My mother does not get the word "no". We do not need nor want "National Geographic". Yes, it's a great 'zine, love the pics, but when the main priority of one's life is to simply get thru the day without going completely insane, sitting down w/ a lovely cup of tea to leisurely expand one's horizons and become a more "well rounded" person just ain't gonna happen!!

I'm not a card carrying member of Greenpeace, but I do believe in economy, recycling, and moderation. I think two garbage bags a week of junk mail (trust me on this - it's a documented fact given my little mailbox to garbage can distraction issue) is just a little over the top. I also believe in the sanctity of my *home*. It's private. It's not a target just waiting to be slammed by mountains of paper. And the advertisers are not helping their cause - I cannot think of a single instance where I have made a purchase based on an unsolicited ad. I *can* think of several instances where I have purposely avoided an item or vendor because of their incessant mailings.

I take great pleasure in seeing the literally thousands of spam messages that are handily dumped into my bulk folder, without me ever having to take a peek at their purulence... now if I could just get a filter for my mailbox!

Where to start? How 'bout abysmal state of special ed?

2005-05-26T08:03:00.000-05:00

I'm beginning to think those wrong minded folks who bitch about the high cost of special education may have a point. My son is "educated" in an administration building, carefully tucked away from so-called normal children, isolated from anything approaching the real world, and quite frankly receiving indoctrination daily on how to be a good client for social services. Which is really quite a hoot, because in this state social services will only get involved (at some point after he turns 18) if I die or abuse him. No job prospects. Hell, no *training* for job prospects. So where exactly is the "educational benefit" here? If there is no possibility for him to receive an education that will assist him in contributing to his own daily needs, then why the hell are we bothering?

It infuriates the hell out of me that people who should know better (aka, allegedly, as educators) cannot look past the wheelchair, the vision impairment, or the unintelligible speech, to see that there actually is a 16 year old young man sitting in front of them, with a lot of strengths and abilities. It sends my blood pressure thru the polar cap that they know best (and what exactly have I been doing for the last sixteen years?? Cultivating dust bunnies???) about what my son needs, when they don't have a bloody clue about what he can do. Best example, from this year of school hell, is something so simple, but so completely definitive of the sorry state of affairs.

My son used to be able to drink from a cup. Someone has to hold it, but... he could drink. That's a functional skill. Useful, in fact. Means you can go anywhere, anytime, and get a drink if you're thirsty. In their infinite wisdom, the "experts" decided last fall that he can't possibly drink from a cup without aspirating. What*ever*! Ooops... bad move on my part, 'cuz now my son *can't* drink from a cup. Not even the damn sippee cup they insisted on using. They've managed to turn an adaptation he didn't need in the first place into yet another *dis*ability.

It wasn't done w/ any concern over his true needs or abilities. It was done for the ease of staff. Much easier to just squirt fluid into a mouth than properly position, provide support, and assist in drinking. Time saving. "Safer" (BS). Crippling.

I don't understand how, 30 years after the first laws were passed requiring education of children w/ disabilities in the least restrictive environment were passed, we still have an entire segment of the population that is warehoused - let's be real, there's no education going on here, it's training on how to be greatful for any shred of quality of life they may obtain somewhere down the line - and completely segregated. When the celebrations of the anniversary of Brown V. Bd. of Ed went on last year, I thought about how little progress has truly been made.

The really sad thing about this is that folks w/ disabilities have so much to contribute. Empathy, understanding, humor, wisdom, stellar examples of patience. Yet we're allowing the fear and misunderstanding to fester for yet another generation by shutting away those folks w/ the most significant disabilities. Think about it - I know when I was growing up 35 years ago, I *never* saw a kid w/ a disability. And when I saw an adult in a wheelchair, or w/ CP, or w/ some kind of obvious difference, I looked away. I was uncomfortable, probably a bit fearful. It was sheer ignorance. And the ignorance continues today, carefully cultivated by an education system and social service system that insists it's in the child's/adult's best interest to shut them away from participation in the community.

And how is my son supposed to learn to advocate for himself? He's only been surrounded by sympathetic (gag) caretakers, disabled peers, and his raving disability rights mom who is completely ineffective. At *some* point in his life, he will be cared for by folks doing a minimum wage job, who will probably be his peers... it will be a totally new experience for him, being w/ nondisabled peers. The educational system will have done such a good job at crippling him, he'll just be bloody thankful to be around someone, *any*one, his age. They'll be able to treat him like crap, and he'll be thankful.

Saw a t-shirt in Walmart the other day - "Keep on staring, maybe I'll do a trick". How perfect is that?

So.... what's the point of this ramble? A lot of anger at the people who refuse to allow my son to participate in normal daily activities, who are instilling in him a disabled mentality. Anger at a system that is so entrenched that parents can't even find each other to join together to change it. Frustration because I *know* that my son can do many things, is a whole lot smarter than anyone has been able to "prove" so far (and for the record, cognitive evaluations that require vision and motor control, as well as verbal communication, pretty much *suck*! I'd like to duct tape, blind fold, and gag the next evaluator and see how well *he* does on the damn test. My son isn't severely cognitively impaired, the flipping test is!! Try telling that, though, to school administrators.). I'm scared too, because I don't know how on earth I'm going to be an effective advocate for adult (non) services when I can't even force the school district, state, OSEP, or OCR to comply w/ state and federal laws that have been in effect for 30 flipping years!!!!

But the greatest amount of anger and frustration is with myself. Why am I so completely incapable of getting my son a decent education, that focuses on abilities, that will *prepare* him for life as something more than a potted plant, carefully fed and watered by whatever lackey (with no training and no investment) the state hires after my demise to "care" for him? Why can't I help him find *his* voice? How do I empower this kid, help him to find the inner fortitude (and trust me, it takes a *lot* of fortitude, or as our governor recently said "testicular virility") to deal w/ people who will, for his entire life, see only the things he can't do as opposed to what he can? I just don't know.