Month: April 2007

  • Long Long Day

    I spoke first thing this morning with the District Autism Coordinator.  She was sadly unsurprised by my report.  She had meetings with parents and another school already scheduled for today and tomorrow, but will be at Michael's school first thing on Wednesday to look into the situation.  She made it clear that though she is paid by the district, she represents the kid first.

    And she told me that twenty years of experience told her that the best way to help kids was to listen to the parents.

    The Executive Director has resigned from our little organization effective tomorrow.  She will be (probably) staying on as an Independent Contractor to do fundraising.  But all her admin functions have fallen to ... me.

    No, there's no more money in it for me.  But my workload has more than doubled.  Dammit.  No more down time at work.  Not that I had a lot before, but I did used to have time for a few checks of the Xanga site and personal email.

    OH, and my boss today mentioned that it would be cool if I'd be interested in co-authoring a book with him.  At first I was inclined to just laugh, but when he pitched his idea, it's a really good one.  It would be a Jonathon Livingston Seagull kind of thing, I just have to wrap my mind around the right story to convey the idea.  But ... it's a good one. 

    >>>

    Aging Out

    Have you stopped lately to think about how old you are?  How about how old you feel?

    We describe how old we are in terms of the number of days gone past, but when we stop to think about how old we feel, we look the other direction.  I'm not "old" because "old" people are closer to death than I am. 

    See?  If we think of it that way, we don't really know how old we are.

    There are 35 year olds who will die tonight.  And there are 70 year olds who will live on to 92.  Which of those is older in this moment? 

    Something to think about.

    You know, I don't smoke.  But now that I feel I have graduated from remedial profanity, I'm thinking about other vices I might take up.  I'm not in the slightest bit interested in promiscuity - that would require a lot more working out at the gym than I'm willing to devote to it. 

    Not because I think I need it, I'm pretty darn gorgeous - but there are serious diseases that can come with sexual adventurism and I'd want to be as healthy as possible to fight them off.  So to me that means the gym and remembering to take my vitamins.  Which, I think I forgot this morning.

    But my profane vice is feeling all lonely.  I think I need to adopt it a companion. 

     

     

  • Fanfare for the Common Man

    Okay, I'm tired of the high blood pressure thing.  I let off some steam by going for a brisk stroll with the boys.  (Any of you who have had the pleasure of walking with my guys know that their top speed is somewhere between snail and slug, but that's okay.  We had fun.)

    Tucker is convinced that we all have fleas.  I blame this on commercials.  There's a particularly revolting commercial that shows fleas on the dog, fleas in your carpet, and fleas in your bed.  We don't have a dog.  But whenever Tucker goes to bed he lies there and feels itchy.  So he's convinced that it's fleas.

    He usually solves his problem by moving into my bed.  I wake up in the morning thinking ... what happened to my blankie, and why is there a foot on my pillow.  It's the escape from the fleas manuever.  Flawlessly executed.

     autismawareness Michael asked me today to explain "autism" to him.  He was pretty mature about it all things considered.  He said, "Look I know it's a word that you and the doctor use, and you seem to know what it means, but I don't.  Is it a disease?  Will I die from autism some day?"

    So I got out some of the paperwork that discusses autism in general and then some of the documentation about Michael's autism in particular and we read it together.  I would say things like, "Autistic kids sometimes get focused on a particular thing or story and then that's all they want to talk about ..."  He said, "Wow, that's just like me."

    It was really kind of cool.

    No, I'm not so mellowed out that I'm not planning to breathe fire and brimstone on the school people.  I just plan to breathe it in such a way that they don't realize what's hitting them until it's all over.

    I used to have a pastor, in Minnesota, who would say, "You can be heard, or you can be effective" in reference to the fact that so many people think that by being the loudest voice at the table they win the argument.  I don't have to be loud, but I WILL be effective.  I am after all a Southern Lady. 

    The offenses this year have been egregious. 

    There will be a reckoning.

    Always
       Unique
          Totally
             Interesting
                Sometimes
                   Mysterious

     

  • How am I Doing?

    I'm tired.  I am tired of drama. 

    I'm taking the boys to their appointment with Julie the therapist this afternoon.  I have a pile of paperwork to take with us.  So I need to stop by somewhere and photocopy it all. 

    I will either speak with Julie this afternoon or make an appointment to speak with her about getting some assistance dealing with the public school people because at this point, I can't think of a single constructive thing to say to them.  And my desire to punish the people who have done this to my son, is a lot higher than my desire to find a reasonable solution.

    I'm wrestling through the factors that will determine how quickly I can move.  If I'm able to be relocated before the next school year begins, there isn't much point initiating a fight with the district.  But if I'm stuck here ... I think it's go to the mats time.

    The level of incomptence, arrogance, and sheer unmitigated neglect Michael has experienced is mind-boggling.  In the second phone conversation I had with the school counselor yesterday he assured me that he had spoken with the Special Ed coordinator and that she was satisfied that the right decision was made in regard to taking Michael out of Special Ed because he's made such progress this year. 

    I lost it.  In tones that my co-worker described and icy and scary I replied that Ms R's assessment of the situation doesn't carry much weight with me as I have seen Michael's grades slip steadily further down each quarter.  Furthermore, since it was Ms R's decision and responsibility to remove Michael from the program in which he was receiving modifications, interventions, and acommodations to help him, I would rather expect that of course it would appear that he has made progress because otherwise it's her competence that's in question. 

    I have emailed the district coordinator.  We'll just see what comes next.  I HATE this.  I know that anytime you get into the kind of adversarial situation I'm facing now, where I have to try to force people to do what's right because - well, it IS the law that says he's eligible for these benefits and wouldn't it be nice if we could just all get along - it never goes well.  Human nature is such that people get all defensive because they know good and well when they've made a bad call and they don't like having that pointed out.  And it tends to be that things go from bad to worse. 

    I just want out of here. 

    now

    I dreamed all night that I was being rear-ended again and again by uninsured motorists.

    well, all night except for the dreams where I was trying to avoid rear-ending a school bus.

    and the dreams where I was slapping the snot out of the woman who decided that Michael was too smart to have a legitimate disability.

    those last dreams were marginally satisfying, but also in my dream I had the voice of my best friend coming through the blue tooth reminding me that it would all be okay, that I could get through this, and that it would be best if I calmed down before I got myself arrested - even in my dreams, I can't just enjoy a good slap up side the head of someone who really really needs it

    It's probably just as well, there are probably people out in the world who dream of slapping me.  But they would be the psycho violent types not the righteous justified types.

     

  • Hypothetically Speaking

    If you were someone really enlightened - say for instance - Jesus.  And you found out on Friday, April 27 that the public school counselor responsible for making sure that the teachers followed the 504 accommodations for your Autistic Child didn't KNOW that your child HAD a 504 plan.  And further more, if that counselor suggested to you that perhaps your child should be tested because he displayed autistic type behavior --- how long would it take you --- being an enlightened person --- to graduate from remedial cursing to the kind of cursing that would cause swarms of locusts to appear?   Hypothetically speaking. 

  • Hunger Awareness

    Are you hungry?  Have you been hungry recently?  I mean really hungry, and scared because there's no food in the house.  I haven't. 

    My tummy rumbled a few minutes ago and I ate the apple and the tuna salad I brought to work with me.  That's as close to real hunger as I ever get these days. 

    There are hungry people in this country.  There are families who pray that the schools won't cancel class due to snow because if they do the kids won't get lunch.  There are families in this country where Mom always lets the kids eat first because she figures that if there's not much left over, she's the adult and it won't hurt her as much as it will hurt one of those growing bodies if she doesn't eat every night.

    I know some of those families.  Their faces come to my mind when I hear comments to the effect that people who are suffering from poverty, or who receive government assistance for their families are somehow cheating the rest of us or getting something for free that the rest of us are working to have. 

    Oh, but you say, we have food banks and food stamps and it's pretty easy for a family to get food in this country.  Right?  And those things ARE free to the people who use them.  Right?

    There are food banks.  And they have posted hours.  To get your box of pasta and tomato sauce, you have to arrive during those hours, most often between 9:00 and 11:00 a.m.  So if you are one of the seven million people working at or below the poverty line in this country, forget it, you aren't going to get those noodles because you're at work.  If you are one of the additional 24 million people (mostly children) who depend on those seven million workers to feed them, you don't get the noodles either.

    This week the Governor of Oregon is taking part in a hunger awareness exercise.  He's eating what he was able to purchase with the average amount of money received by someone who qualifies for food stamps in his state.  He had $21. 

    Many of my readers know that it wasn't that long ago that my family needed food stamps to put the noodles on our table.  I was trying to work, not making ends meet, and the cost of rent, utilities and gas to get to work equalled the amount of my income.  The State of Colorado awarded my family of three $96 a month.  Rounding a month down to four weeks that comes to $24 a week and divided by three means that we were assisted to the tune of $8 per person per week.

    I can and have found ways to eat pretty cheap.  One thing I did was get a job in a restaurant where I had the benefit of soup and salad for my lunch every day.  Another thing I did was buy beans, rice, peanut butter, and other staples that I could use to make meals for pennies.  Tucker and Michael had fresh fruit most days.  I bought bread then and still do at the "day old" outlet.  (I highly recommend this to anyone who has this available as an option.  The bread costs half what it does in the grocery store, and at the outlet I use for every $5 you spend, you get a free item.  I usually spend about $10 and I bring home two or three bags of bread and stick it in the freezer.)  And none of us went hungry. 

    And I want to say again, I have some of the most wonderful friends in the world.  I won't name them because I know they would be embarrassed.  But I will tell you that there were times when I was down to the last money in my wallet and trying to decide between gas for the car or milk for the kids when I would go to the mailbox and find an unexpected check. 

    Earlier this week, I talked about the recommendation from the boys' therapist that I move to another state where there are better services for Autism Spectrum Disorders.  I told you that I had that moment of realization that I had been resisting making the move because I was irrationally convinced that moving to a place where I want to live would necessarily mean a hardship for the guys.  Part of where that thinking comes from is the experience we had when we moved here three years ago. 

    My relationship with the Colorado Department of Human Services has ended - Thank God.  During the time that I received food stamps (about 14 months total) I had a two month period where I received nothing at all due to the fact that there was no income reported for that time period.  I didn't report any, because I didn't HAVE any.  The response of the Department was to send me a letter telling me that my benefit was denied because I was guilty of fraud.  They further demanded that I repay money paid the month prior to that time and said that if I failed to do so within a given time period criminal charges would be filed. 

    I didn't have the money to repay them.  I'm very lucky because I have a Pre-paid Legal Membership and the letter from my attorney there got someone's attention.  They dropped the criminal complaint.  They never apologized, and they never paid any of the "benefit" that I was supposed to have received those two months. 

    When I lost the waitressing positon, I sent a letter the following day explaining that I had lost the income from that position.  I got no response and for the next seven weeks the kids and I lived on child support, the amount of money I had managed to squirrel away in savings, and the $70 a week I was awarded for unemployment compensation. 

    As soon as I got another job, I notified the case worker.  The end result of that?  A decision that I had been overpaid and that I owed the money back to the state of Colorado.  I wrote a check, which they cashed, for the amount they said I owed.  Then in September, I received another letter stating that I owed another $135 and that if it weren't paid by August 31, they would place an intercept on my tax refund to collect the money.  They did that.

    Some really industrious number crunchers added up all the costs of all the programs and all the tangibles they could find associated with poverty in this country and they discovered that it comes to a total of something like $500 billion.  yeah.  They discovered that it costs approximately $16,500 per man woman and child in poverty. 

    Anyway, I tell you that to get to the point of digging down to the bottom of a couple of different things that I've been thinking about.  I have been acting lately like I think I live in a world of scarcity.  I eat more at any given meal than I am really hungry for, as though I don't think there will be enough at the next meal.  I save money obsessively and fret that I can't figure out a way to save more as though I'm afraid I won't have income tomorrow.  And I worry about the fact that I have to pay for car repairs from last week's accident even though I know that's what the savings account is for because the money that I will have to take out of that savings account, what if I REALLY need it the following week? 

    How much is enough?  What amount of money would I have to have stashed away in the mattress in order to feel safe?  I know for certain that it's more than I have now.  I incurred some debt over the past several months and I've lain awake more nights than I care to admit worrying about that.  Trying to figure out how quickly I can get it paid off.  And planning the timing of my move so that I won't have any debt when I go.

    And how quickly will I move?  Well, for right now, Michael and Tucker are both receiving excellent therapy that I believe is going to make a real difference in their lives.  I want them to have the benefit of that therapy.  I also know that there's another school year coming, and it would be really nice to be able to have them start and fnish that year in the same place.  But, the school that Michael is in doesn't meet his needs academically, socially or otherwise.  Surely it would be better to move, even if it's in the midst of a semester than to toss good after bad with my son in a less than optimal circumstance. 

    I'm hungry to know what's the best thing to do.  I'm worried about how long it will take me to find another job and what that job will pay.  I worry about whether I can afford good housing and what it will cost me to move.

    There is a cost to hunger.  There is a real dollar cost for the services and resources spent or lost.  And there is a human cost.  There is a price that's paid in loss of confidence, security and hope.  I pay the price when I lie awake at night figuring and refiguring my budget. 

    I am damned lucky and I know it.  I had a network of friends who stood beside me and wove a pretty tight web.  They were determined that there would be bread and peanut butter in my pantry at all times.  And there has been.  I wonder what it would be like for me if I hadn't had their support.  I just wonder ...

  • weird magic needs no
    satin swirl distracting eye
    suspicious watcher

    it rises inside
    casts a thin silvery line
    catches my belly

    ordinary light
    over the breakfast table
    remembered laughter

    current below talk
    homework, pets, appointments, milk
    your taste on my lips

     

    Sometimes a poem takes a twist that surprises me.  This one began with the phrase "weird magic" and I start thinking about what kind of magic is really weird.  The first stanza came as a haiku, but it didn't even come close to a complete thought, so I realized, this isn't a haiku, it's a stanza.  okay. 

    And then it seemed to me that the strangest magic I know, isn't flashy, or expensive, or wrapped up in showmanship.  It's something deep, intense, and personal that happens in an ordinary moment of awareness. 

     

  • Confronting a Problem

    You ever have one of those realizations that you have been your own worst enemy?  I had one of those moments over the weekend and I'm still processing the implications.

    The boys had an appointment with a new therapist.  I stumbled across mention of Julie when I was looking for resources to help someone in the course of my normal workday and I immediately made the call to schedule an appointment.  I could not have been more impressed or pleased with the way she conducted things with the guys.

    I was thrilled by her easy and affectionate acceptance of their quirks.  She seems to actually LIKE socially awkward kids who have refined blunt to a new high.  Her practice is to work with the kids both individually and in a group setting so they can practice skills under normal social conditions. 

    She also talked with me about advocacy issues.  We revisited the inexplicable decision by the public school to remove Michael from Special Ed on the basis of his IQ.  Normal to high IQ is not unusual in a kid with Autism Spectrum Disorder.  Possession of a normal to high IQ does not mitigate or alleviate the needs for services to achieve an appropriate education.  But, they overruled me and shifted Michael to a "504" plan telling me that all he had to do was request help and he would get it.

    Let me be blunt here as my children have set the example: Autism Spectrum Disorder is a disorder of organization.  He NEVER thinks he needs help because to him the fact that he didn't "get" that there were four parts to the assignment is not a problem!  That just means that he finished his work early.  And it NEVER occurs to him that if he's done and the other kids are still working that might mean that there was something he didn't do.  He is happily clueless and tells me "I use my spare time making up stories in my head."

    So this year, we've seen his grades fall another notch down the totem pole. 

    Julie told me about some people I can call who may be able to help me navigate the system to get help for my happy but lost little guy.  She also told me that I need to think about moving.  Seriously.

    The waiting list for support services for ASD and other developmental disorders is over 7 years long.  If I got Michael on the list today, he wouldn't be eligible for assistance with basic services to help him acheive independence until he's past his 20th birthday. 

    It's not a shock or a surprise to me that I will probably have Michael with me for the rest of my life.  Tucker I think will be able to make his way in the world, or at least make the world let him have his way.  But Michael is going to need a lot of support.  I'm already 43 years old.  What is going to happen to my son when I'm gone?  Or what will happen if I'm still around but not able to work?  These questions keep me awake at night.

    I have wanted to move from here almost from the day I arrived.  Colorado is a beautiful place, but it hasn't worked out so beautifully for me.  The expectations I had before I arrived here have become some of the biggest disappointments of my life.  Every aspect of my life has been several degrees harder than even the worst case scenarios I prepared for.

    So I got online and did the research to see what resources are available in the places that I've considered moving to.  Another shock and surprise: the place on the top of my personal wish list for future homesite is also the place with the best resources. 

    Yeah, that shocked me.  You know why?  Because I had been assuming that simply because I wanted to go there, it would be a bad thing for the guys. 

    yeah

    How smart is that?!?

    Sometimes it takes something really big to smack me with the realization of crazy thinking that I've been carrying around.  Why on earth would I assume that anything that made me happy would be something that would necessarily make life hard for my kids?

    I don't know how quickly I'm going to be able to make the changes we need and want, but I have given myself permission now to see my days here as coming to an end and I can't tell you how relieved that makes me feel.   Well, okay, I could tell you but it would sound all melodramatic and emotional.

    Maybe it would be better if I just wrote another poem ...

     

  •  

    Remember when you open the box
    draw tissue paper aside
    breathe the sharp new scent
    leather upper, stacked heel
    stiletto silhouette,
    this is not the slipper
    Cinderella wore across the floor
    to kiss her fellow.
    This is just a shoe in a box
    at a department store.
    No magic wand will trace an
    arc of sparks across impossible blue sky
    to buckle it in place.
    You will draw your card from your wallet
    and slide it to the point of sale.
    Because in modern times, we know
    it's all about head over heels.

     

  • Waste of an Out of Town Day ...

    The boys are out of town.  Not my children, my bosses.  They had a meeting in New Orleans so us women have the office to ourselves today.  You'd think we'd take advantage of that and make it an easy day but NOOoooooooooooooo - we're all working.  Like idiots. 

     

  • New Friend

    Tucker has had a hamster for the past year and a half.  Abdul has got to have been the meanest hamster on the face of the earth.  He bit everybody - twice.  Tucker tried the whole time the hamster was with us to gentle the little beast.  He would feed it and stroke it's nose and all kinds of things like that.  And still, the hamster would bite. 

    But about twelve days ago, the hamster passed away.

    The funeral was a sad sad affair in which Tucker sobbed and said, "That was my only friend and now he's dead."

    Okay, what kind of Mom can resist that level of sadness. 

    While my sister's suggestion that I use that as an opportunity to encourage Tucker that he could spend the rest of his life storing up treasures in heaven and that one day he and Abdul could share a celestial mansion, has great merit.  Instead, I bought him a new friend.

    Meet Nameless:

    I suggested that the new friend be named "Sweetie Pete the Parakeet" but the reaction of my son was not favorable.  He suggested that first of all that sounded like something I would have come up with.  And second that since the bird is a girl he thinks that Pete isn't the best choice.

    Tucker has been keeping a journal of the bird's significant moments.  So far it goes like this.

    Nodded head.

    Blinked.  Twice.

    Made eye contact with me.

    Shrugged.

    All I can say is that when I was helping to get the bird from the cage at the pet store, it perched on my finger, it looked at me, and it didn't bite.