Last week we packed the truck to bursting, loaded up the kids, and headed off for our second annual family vacation, destination: Cambria.
We learned the hard way that heading out of town on a Friday morning is a big mistake, because that’s exactly what everyone else is doing. What should have been a four-hour drive in clear traffic took us about eight hours (yes, eight hours!) because traffic was stop and go the entire way.
Given the size of our family, renting a house is pretty much a must. We rented a lovely house up on a hill, just a couple blocks from the ocean. This was the view from the living room:
We saw zebras grazing right off Hwy. 101. They are apparently owned by Hearst Castle (which is just a hop, skip and jump away), but allowed to roam free on the castle’s vast acreage.
We saw a cemetery. This was pretty special. I’ve always been intrigued by old cemeteries, and this one has graves dating back to the 1870s. It’s I guess what you would call a community cemetery – very small town feel. It’s nothing like the massive, rather homogeneous commercial cemeteries like Forest Lawn or Rose Hills. This one covers probably an acre or two, and all the graves are very personal, many with chairs or benches set up next to them for loved ones to sit and reflect, and nearly all seem to be personally and uniquely tended to. It was very beautiful and moving.
Now, if I were Susie Sunshine, I would just leave it at that. We had a wonderful time, it was amazing and perfect, just look at all of our gorgeous photos to prove it! But Susie Sunshine I ain’t. Not to overshadow the positives – and there most certainly were a whole host of positives – but.
It was kind of a drag, too. The drive up was awful. The drive back home wasn’t a whole lot better. I was clueless about the climate in Cambria – all I saw was “beach town,” so I packed mostly shorts and t-shirts for me and the kids. It was actually mostly chilly. The beaches up there aren’t like the beaches down here – not a lot of sand, mostly rocks and bluffs and freezing cold water. We exhausted everything this little town had to offer pretty quickly – a couple of days would have sufficed, but (a) we didn’t know that, and (b) there was a five-night minimum stay on the rental (as well as just about every other rental in the area we looked at). The kids were going a little stir-crazy and missed the comforts of home. Finn was out of sorts for a humongous part of the time. Not sure exactly why, except (a) his foot injury was/is still bothering him (that has turned into quite the saga of its own, which I will hopefully get around to updating in the next day or two), (b) he’s just at a difficult age and very prone to being out of sorts and throwing epic tantrums, and (c) I think being out of his own comfortable surroundings is a little tough on him. Renting a house and having a lot of the conveniences of home also means not really being able to get away from the usual responsibilities of home, like cooking and cleaning up and doing laundry, so I personally didn’t feel like I got much of a vacation.
Anyway, I’m still trying to decide if I feel like it was worth it – worth all the expense and trouble. Unfortunately, because of the size of our family and what we can afford, road trips like this are pretty much the limit of what we can swing in the way of family vacations. Last year when we took all the kids and went away for the first time, we just marvelled that we were actually able to pull it off, so I think it was sort of easy to overlook the inconveniences. I’m glad we went away again, I guess, but I’m wondering about next year. I think a little more research and careful consideration will be in order.
I learned of Amy Winehouse’s death when I signed onto facebook today, two days after she was found dead in her London home at the tender age of 27. I missed the news as it broke because we’re on vacation, internet service is sketchy up in these parts, and anyway, facebook and internet aren’t all that important when one is trying to get away from it all with one’s family. Still, when I did see this morning that Amy Winehouse had been found dead a couple days ago, it stopped me in my tracks and a feeling of sadness washed over me. Another one bites the dust.
It’s widely assumed that she died of a drug overdose. Probably a pretty safe assumption, given the notoriety of her addictions. So young, so much talent, so much life ahead of her, so much to live for … gone.
My first husband was 33 years old when he died of a drug overdose. The autopsy report and subsequent death certificate listed the cause of death as “respiratory arrest due to acute cocaine intoxication.”. The autopsy report indicated that there were needle tracks on his arm. It was a slow demise, and a part of me saw it coming for a long time. As teenagers, he and I partied and played with illicit drugs together, but there came a point when I realized it was no way to live, the all-night benders, chasing the next high with money we didn’t have, not being in possession of all our faculties. I realized that I much preferred a safer existence and having my wits about me. So I stopped – most certainly before it became an addiction – and I haven’t touched an illicit drug in about 25 years.
He didn’t stop though. He had me fooled for a while, but it wasn’t long before I realized he had a drinking problem, and a pretty serious one at that (I grew up with a severely alcoholic father, so the signs were not at all alien to me). Then it became clear that he had a pretty serious pot problem – as in, he smoked it every single day, two or three times a day, and lied constantly about it. The cocaine, though … It wasn’t until a couple months before he died that I learned about that, though I knew something very strange and scary and crazy was going on with him for some time.
I’ll never forget the day the county coroner came to tell me he was dead. I had finally filed for divorce about two weeks prior, and he was staying with his parents. It was a Saturday, and I was cursing him for never showing up that day for what was supposed to have been his first supervised visit with Kevin. A phone call to his parents revealed that he had never come home the night before. I had lived through plenty of those nights, the fucker.
So I’m out in the garage vacuuming out my truck, with the big garage door open, and Kevin upstairs in his room napping. A plain white sedan pulls up in front of the house and a man gets out. I assume he’s lost and intending to ask for directions. Instead, after verifying my identity, he informs me that my (estranged) husband was found dead that morning. In some stranger’s front yard. Preliminarily, I was told, it looked like a drug overdose. I had seen it coming for a long, long time, but it still shook me and shocked me and stole my breath away.
His parents had such a hard time grappling with it that they recasted his death to the general public (including family and friends) as a heart attack. A heart attack at age 33. My own brother, who looked up to him, convinced himself that (a) there was foul play/some sort of conspiracy involved in his death, and/or (b) all the mud he slung about me after our very contentious breakup must have been true and I drove him to his death.
Such is the nature of wrestling with the senseless death of young people who seemingly have everything to live for. It is extremely difficult, I think, for humans who love somebody engaging in self-destructive behavior, to accept that they did it to themselves, that they couldn’t or wouldn’t stop, that they might have been only one good choice away from living instead of dying.
My ex-husband’s death was categorized as “accidental,” as Amy Winehouse’s probably will be. But the truth is, with drug overdoses in the drug addicted, it’s impossible to ever know with any certainty: was it accidental? Did they believe they were invincible? Did they just not care about living or dying anymore? Did something finally happen that made death seem more appealing than life?
Impossible questions to answer. In any case, however, those who loved them and watched them slowly self-destruct, who on some level likely saw it coming – they are left to try to make sense of something utterly senseless.
My heart goes out to Amy’s loved ones … and everyone touched by a death like this.
It’s funny . . . last year on our wedding anniversary, I wrote something heartfelt about the ups and downs of marriage, about being naive and utterly clueless when you exchange vows about anything that life is going to throw at you. Although I was sincere in expressing a certain respect and reverence for the unknown of it all, still, I remember clearly at that time having this feeling that we had somehow arrived. That we had been tested as much as a couple could be tested, and we had faced it all down and come out of it as strong and sure as any couple could be. There was a certain, vague arrogance . . . like a vaccine, all the troubled waters we had bested had somehow made us immune to further strife.
And I look back a year now, and realize how naive I still was. Because the truth is, none of us ever gets to say that we’ve arrived. None of us ever knows what life is going to dish out next, and whether that helping of adversity might knock your feet out from under you.
I’m not here to complain or wallow in all the sadness and unfairness. Life is good, and rich, it truly, truly is. But it’s been a tough year. And with each passing year, I learn a little more about myself, about my husband, about marriage, about life. Happily Ever After is not a destination, or even a goal that is achievable. It’s a journey, a constant work in progress.
Michael gave me a card on our tenth wedding anniversary yesterday in which he wrote a beautiful, long poem. These words will dwell in my heart:
I think love may be like a well,
But it is not just for wishing upon,
Or to dip from;
It needs replenishing constantly,
And much tending to by its owners
In order for the well to run deep,
And remain deep.
It was an ordinary summer day. We took the kids to the park – and got this great footage of Finn navigating the stairs on the playset (what a superstar!) –
– and had a lovely picnic lunch. Then we loaded the kids up in the trusty ol’ Expedition to go home. When we pulled up to the house –
Wait. Let me preface this by saying that Finn sits in the middle row in a carseat, still rear-facing. That’s right, three years old and still rear-facing. He’s a peanut, and he ain’t complaining, so.
Anyway, we pulled up to the house and the kids began the usual melee to get out of their seats and out of the truck – pushing, piling on one another, and so forth. Somehow Finn’s foot got caught against the seat back next to him as it was being pushed down by the kids in order for those in the way-back third row to climb out, and his foot was somehow in this manner injured. I didn’t see it happen, as I was still in the driver’s seat. All I know is that Finn started WAILING, and continued to cry and scream when I got him into the house, and would not bear any weight on his left foot/leg. It became clear pretty quickly, though I could see no swelling or visible injury, that we were going to have to make a visit to our home away from home, the ER.
I took Kevin and Lilah with me so they could explain to the doctors what happened, because they both apparently saw it happen, and I didn’t, and seriously, I was afraid of the whole thing looking fishy if I went by myself. So, yeah, I took them for credibility.
The most awesome part was when they took us back into the x-ray room and the tech asked me – in front of my teenage son – “Any chance you’re pregnant?” Ummmm . . . well. Most likely not, but I guess anything is possible, right? then the tech asked me – in front of my teenage son – “When was the first day of your last period?” Ummm . . . about a month ago. Not quite. I’m pretty sure I saw Kevin out of the corner of my eye trying as hard as he could to melt into the floor right then.
Anyway, all for safety because of the x-rays. So Kevin helped hold Finn while Lilah and I went into the next room.
Long story short: x-rays were inconclusive, but based on his symptoms, they’re assuming a growth-plate fracture in his foot. So they splinted him up and told me to keep him off his foot until he sees an orthopedist next week. Right. We’ll see how that goes. And we leave for vacation in two days! Yay.
Well, well, well. The long-awaited, much-anticipated draft IEP finally arrived in yesterday’s mail (Michael arrived home after our mail, including a notice that we had been missed to sign for a Certified Mail package, had been delivered, and managed to chase down our mail carrier up the street to sign for it).
I’ll confess right off the bat that it was upsetting to read. It is so, so difficult for me to separate myself emotionally from all this; actually, I’m not really sure I’m supposed to endeavor to do that, but I do know that continuing to be overly emotional about it does not necessarily help me to be a better advocate for Finn.
In a nutshell, what our school district is offering/recommending to us for Finn is preschool in a separate, special ed classroom “MOD/SEVERE” (at a Title 1 school – not a “mainstream” school), five days a week for four hours per day, with speech therapy and occupational therapy in both group and one-on-one settings. (These are the only two therapies being offered because these are the only two areas of assessment we consented to.) There are lots of goals outlined for him to reach by May, 2012, including things like demonstrating an acceptable attention span, to wit:
By 5/15/2012. When presented with an adult directed activity involving the adult, Finnian and at least 1 peer, Finnian will maintain attention (looking at activity, body facing forward, engaged in activity) to the activity for a 10-minute period, with no more than 1 point of redirection (visual, gestural cues) minimum of 3 opportunities daily as measured through 10 random data collections over a one month period.
Huh. Sounds like a party, doesn’t it? I don’t know . . . this just rubs me all kinds of wrong ways. Beginning with the fact that this goal stems from the school district’s determination of Finn only being able to demonstrate an attention span of “3 seconds,” during their assessment, and as reflected in their assessment report. What a load of hooey! This kid has an amazing attention span! Ask anyone who has spent any kind of meaningful time with him. What would they possibly expect of ANY almost-three-year-old (at the time of the assessment) in a strange setting with several strange adults hovering over him and making rapid-fire requests of him? But, given the manner in which the school district has proceeded with this process, we were never given the opportunity to request that this assessment report be modified to more accurately portray his ability.
Also, is it just me or does this sound very . . . I don’t know . . . performance-centered? I mean, Finnian is a child, for goodness sake. Is this what we have to look forward to for him – being stuck in a school setting where his every move is measured and recorded and somehow scored?
There are lots of other goals listed, including recognizing colors and letters, etc. Only some of the goals bug me.
I am rather upset, though not altogether surprised, however, at their offer of placement at this particular school. No alternatives or options. I get the distinct impression that this is where our school district expects to send ALL children of Finn’s diagnosis, that in the eyes of the school district, their “offer” was already set in stone long before they ever laid eyes on Finn or conducted any assessments or IEP meeting. Which leaves me feeling very pigeon-holed. Where is the “individualized” aspect of this IEP? Or is it really just a one-size-fits-all-kids-with-Down-syndrome proposition?
But there I go, getting emotional again.
What I can say at this point is that we are not going to be making any hard and fast decisions about this anytime soon. We will visit the preschool program they are recommending in September. Off the top of my head, here are some of the options for us to think about, in no particular order of preference:
- Accept the school district’s offer of placement and services.
- Accept the school district’s offer of services, but not placement.
- Look into a Montessori preschool, and couple that with ST and OT through the school district – or through our health insurance carrier.
- Look into a church-based preschool (horrors!), like the Mother’s Morning Out program I had the twins in when they were three – a couple of mornings a week. Not extremely academic, but may allow Finn an opportunity to be around “typical” peers in a setting away from home. He would also not be required to be potty-trained, which he is not. Couple with therapies through the school district or our health insurance carrier.
- Forego preschool altogether for the time being and just do therapies through the school district or our health insurance carrier. Maybe join a mommy-and-me class one or two mornings a week with him for the socialization/peer modeling aspects.
- Forego preschool and therapy for the time being and revisit in a year.
Of course, the alternative preschools, like a Montessori or church-based, would be dependent on their willingness to take on a child with Down syndrome.
Lots to think about. Like I said, we’re not making any decisions now. We are going to enjoy the rest of summer, and when all the other kids are back in school, we’ll wrestle with this some more.
No IEP in today’s mail. Michael called the school district again. Program Coordinator not in today. He was able to track down someone else who told him that Finn’s IEP went out in today’s mail via certified mail. Nobody will be here to sign for it tomorrow. Nice.
I still don’t understand. They were in such a rush to conduct the IEP meeting, and somehow were able to organize it, with a half-dozen people in attendance (minus us), but nobody got around to dropping the paperwork in the mail until today – a week later? Paperwork that had to have already been drafted and sitting there on the table at the IEP meeting.
Talked to a special ed attorney today. The thing about hiring a special ed attorney is it costs money, and we’re not exactly rolling in dough. Michael was able to talk to him on the phone for about twenty minutes, though, and the guy said that in actuality, it’s not just that they’re supposed to conduct the IEP meeting by the child’s third birthday, they are supposed to “make an offer of services” by the child’s third birthday. An offer of services, in this case, is the written, proposed IEP. So the fact that they held the IEP meeting before Finn’s third birthday didn’t do a whole lot to cover the school district’s ass since they still, a week after his third birthday, have not gotten the written, proposed IEP to us.
But it all boils down to damages. Do we have any actual damages? If so, what are they? Like this attorney said, the school district can make a thousand procedural screw-ups, but if, in the end, the child is not harmed, then it’s kind of moot. So we can’t make a determination until we see the IEP they are proposing for Finn. Which, did I mention, we have not yet received?
I am lately having fantasies of Michael changing his professional focus to special education. We could open our own law practice. I could dust off my old paralegal skills. I never thought I’d want to be involved in the legal field again, but if it were something I was personally passionate about . . .
And Finn could work there one day!
Seriously, have you ever seen a transition happen in so many parts?
Last I wrote, the school district had informed us under no uncertain terms that they would be holding Finn’s IEP before his birthday, with or without us – and with their legal counsel present – despite our protests that we were not going to be available on either of the dates they said they were going to conduct the IEP. We followed up with this letter to the school district.
I believed in my heart of hearts – naively, apparently – that after we sent that letter, clearly citing the legal authority that protects our right as Finn’s parents to be present at the IEP, that they would not go ahead and conduct the IEP without us. After all the research we did and the people we talked to, including a former SELPA director who we met for lunch and talked to at length and who is so appalled by the situation that he wants to step in as an advocate for us, it just seemed inconceivable that the school district would escalate what has already become such a terrifically adversarial situation further.
I was wrong. We were wrong – all of us who thought they couldn’t or wouldn’t have Finn’s IEP without us.
I was out most of the day last Wednesday – the day before Finn’s third birthday. When I got home with the kids in the afternoon, there was a voice mail message from our Regional Center Service Coordinator saying that she had received a call from the school district saying that they were going ahead with the IEP at 2:00. Her message was left on our voice mail a little after 1:00. By the time I got the message, the IEP was already in full swing – or probably over. That morning, our new advocate friend had been making phone calls to his connections on our behalf – to the director of our SELPA area board, to the school district Program Coordinator, and to the school district’s legal counsel. He had hoped to reason with them for us, but he was never able to get through to anyone. He was able to confirm for us later in the day that they had, in fact, held the IEP without us.
So we were robbed of the right to request modifications to the assessment reports. We were robbed of the right to request an independent evaluation, had we felt that to be warranted. We were robbed of the right to contribute input to Finn’s IEP. We were robbed of the right to participate in the meeting as the two people who know Finn best.
And here’s another kicker: nearly a week later, we still have not received the fucking proposed IEP they drew up. I assume that had we been at the meeting, they would have had it sitting right there for us to take home and ponder – am I wrong? But they haven’t bothered to, or been able to, for whatever reason, get it mailed to us yet. Michael finally called yesterday and left a message for the Program Coordinator inquiring when we can expect to receive the proposed IEP. She called him back this morning and said she would “try to get it in the mail today.” Really?
There are parents out there who are advising us to do what we can to get along with the school district, to trust that they have Finn’s best interests at heart. While I see their point, I am having a whole lot of difficulty with it. I know this isn’t personal – the school district isn’t setting out to target Finn or us – I know that. However, they have screwed us at every turn so far in this process. How many other kids/families are they screwing? Change isn’t brought about by lying down and taking it. While I understand the logic of not setting the tone for what is going to be a very long-term relationship as adversarial, the fact is that they set that tone right out of the gate. They have made no effort whatsoever to even give the appearance of trying to work with us. And as a result, we are left feeling frustrated and angry, and wondering just what the hell we’re supposed to do in order to protect Finn’s rights and get along with a system that doesn’t care to get along with us.
It starts with a flittering thought at the back of your mind . . . a wish to have a mark placed on your body. What drives this wish? Any number of things: a genuine appreciation for something that can be beautiful and artistic; the wish to have something symbolic and personally meaningful commemorated in a permanent way. It can be a statement: I am my own person; I don’t follow the rules of who you think I should be. This is my life and my body and I am in control of both.
I was 32 when I got my first tattoo. When I got that first tattoo, the tattoo artist said to me, “You’ll be back.” I scoffed. I had only ever intended to get one tattoo. And yet, just a few weeks later, I was back.
There is something about getting another tattoo. Slightly rebellious, a little anti-establishment. There is something about being willing to make that permanent committment to having a mark on your body. There is the slightly nervous buzz as you enter the tattoo parlor, the rush as the sting of the needle enters your skin and you know that there’s no turning back. The cringing through the pain, and running your fingers lightly over the raised, swollen skin afterwards, knowing the mark is a part of you now, forever.
Every few years a murder case comes along that rivets the nation. It invariably involves the death of a child; nothing, it seems, elicits people’s hunger for justice more than the life of an innocent child snuffed out.
The murder case that is holding everyone’s attention right now is that involving Casey Anthony, a now-25-year-old woman accused of murdering her two-year-old daughter three years ago. Despite what seemed to be a mountain of damning evidence against her, Casey, who faced the death penalty if convicted, was acquitted on July 5. I learned of her acquittal when I signed onto Facebook that day; suddenly my newsfeed was jammed with everyone’s outrage at the verdict.
It is undoubtedly shocking to most of us in the general public that she was found not guilty. What about all the lies she told about her daughter’s disappearance? What about the fact that she didn’t even report her daughter missing for a month? What about the fact that she spent that month partying? What about the internet searches found on her computer for “chloroform” and “neck breaking”? What about the fact that Casey’s own mother reported to police that Casey’s car smelled like a dead body? What about the fact that little Caylee’s body was finally found in the woods just a short distance from the home she and her mother shared with Casey’s parents, with duct tape pasted over her nose and mouth, and a heart sticker affixed to the duct tape, which apparently was the same kind of sticker as others found in Casey’s home?
It’s almost inconceivable that Casey could have been acquitted in light of so much seeming to point to her guilt. Parallels can be drawn with the Scott Peterson murder case a few years back, in which Scott Peterson was accused of murdering his pregnant wife and their unborn son. In that case, there was also no direct forensic evidence tying him to the murder, no clearcut motive, no witnesses, and no cause of death was ever ascertained. Just a load of circumstantial evidence; but in that case, the jury convicted him and he is now on Death Row.
But Casey was acquitted. Everyone out here seems to think the jury made the wrong decision, which implies that everyone thinks they could/would have made a better, right decision about the case. We have to remember, however, that our opinions have been shaped by everything we’ve heard and read in the media, and if you are sure that you would have found Casey guilty, then you most likely had that opinion before the trial ever started and were therefore not impartial. None of us were sitting in that jury box. And presumably, the jurors selected were an impartial panel – meaning they went into the case dispassionately, without preconceived ideas about Casey or the case. That is how a fair trial is supposed to work, pursuant to The Sixth Amendment to the U.S. Constitution, to wit:
In all criminal prosecutions, the accused shall enjoy the right to a speedy and public trial, by an impartial jury of the State and district wherein the crime shall have been committed, which district shall have been previously ascertained by law, and to be informed of the nature and cause of the accusation; to be confronted with the witnesses against him; to have compulsory process for obtaining witnesses in his favor, and to have the Assistance of Counsel for his defense.
Accordingly, a jury is not supposed to decide based on emotions and preconceived opinions. They are supposed to carefully and impartially weigh all the evidence and testimony presented to them during the course of the trial, and make a finding based on that, and only that. And in the case of a charge of first degree murder, as in the case of Casey Anthony, a finding of guilt must be made “beyond a reasonable doubt.” Several of the jurors have apparently since spoken out indicating that they would have liked to have found Casey guilty, but the evidence just wasn’t there.
So now Casey Anthony will walk free in less than two weeks’ time. Or will she? Let’s consider what kind of life she has to look forward to:
By and large, she is viewed by most as the worst kind of villain – a child-killer. It’s not likely that she will ever be able to walk down the street or stroll through a shopping mall without being recognized; her face is now one of the most recognizable faces in the world thanks to all the media attention this case has received. She reportedly has about $300 in her prison commissary account, and that’s all the money she has in the world. She has no job waiting for her; who is going to want to hire her anyway? She may get a book and/or made-for-TV-movie deal, but there is talk now of the State of Florida pursuing her to reimburse the State for funds expended on the wild goose chase she sent authorities on in their search for Caylee because of Casey’s lies (which she has been convicted of) – so chances are, any profits she makes will go to the State of Florida as recompense. It’s doubtful she even has a home to go to when she leaves prison – now that she’s accused her father of sexual abuse and claimed that her parents were involved in Caylee’s death by conspiring to cover up an accidental drowning, it seems extremely unlikely that they will be eager to take her in and give her shelter. Plus, whatever did actually happen to Caylee – if Casey was in fact involved – will hopefully weigh on her conscience and haunt her for the rest of her days. She will likely live out her life as a pariah, and forever in danger of vigilante justice. No, it will not be a life behind bars (though, if she really is the sociopathic person so many of us believe her to be, chances are she’ll find her way into a prison cell again at some point), but it will not be a life of freedom as you and I know it, either. Frankly, if I were her, I’d be scared shitless about leaving prison in a few days.
The terrible, heart wrenching truth at the heart of the entire spectacle, though, is that an innocent toddler’s life was extinguished, and nobody will probably ever be legally held accountable for it.