Our Government Dollars Hard at Work

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

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

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

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

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.