Barnmaven

The one where I'm supposed to have the answers

Life is an endlessly-evolving narrative, one with twists and turns and moments of suspense.   Sometimes I think my son's  life purpose is to make sure the twists and the suspenseful moments are the norm rather than the exception.

We had a fun incident with his transportation a few weeks ago, and by fun I mean the kind where you want to bang your forehead on your desk repeatedly.  The kind of fun that makes you wonder if there is a school administrator anywhere who actually knows what their legal requirements are when an IEP is in place.  The kind of fun any parent of a special needs child gets to experience on a regular basis.  Which is why most of us lean toward rampant alcoholism.

There are important factors to note in regards to public school transportation services and special needs children.  If a child's behavior is an adjunct of that child's disability and that behavior does not constitute a danger to the child or to others, the school is required to provide the service.   However, on the day that my son decided to make a big noisy stink because he thought maybe doing so would bring his mother home faster, the school prinicipal decided to remove him from his bus despite the fact that neither his driver nor the aide on the bus thought that his behavior was a danger. The school called me to come get him.  Immediately.  Except I am at work, which they fully well know is an hour's drive away.  SG is at work as well, a 45 minute drive.  My mother was on that day the closest adult who could get him and she would need a half hour to get to the school to collect him.  The principal insisted he be picked up immediately.

What am I supposed to do?

"What would you like me to do?" I ask, a shrill tone creeping into my voice.  

"Well,  if I had a child with your son's behavioral issues I would have a better backup plan," she informs me.

After I curtly advised her that my mother would arrive as soon as possible, I hung up the phone and started picking chunks of my brain off the walls and floor of my office.  

I've since spoken with the district assistant superintendent twice, the director of transportation twice, and this morning we had a followup IEP meeting.  At various points throughout these conversations I have raised my voice at least four times and managed to limit my use of the phrase "call my fucking lawyer" to just once, though I'd be prouder of myself if I hadn't said that at all.

I just hate this shit.  I hate the feelings of helpless anger and shame when I have to deal with the district's inability to understand either my son as an individual or their own legal responsibilities in regards to his educational services.  I hate feeling judged by someone who doesn't have a son like mine, who has never a day in her life had to try to have three or four different backup plans in case things spiral south for her child.  I hate feeling like I have to defend our family and the fact that we do have backup plans - about four or five of them - but that sometimes circumstances dictate that none of them are workable at the moment.  I hate losing my temper and my composure when I'm talking to people to whom my child's well-being isn't as high a priority as I think it ought to be.  And as silly as it may sound, I hate the thought that people somehow think my son's autism is some kind of failure on the part of this family.

I hate that they don't get him.  That it seems to me they see only his behavior and his diagnoses and not the person.  That they don't see his sense of humor -- or when they do notice it, all they can do is say "but he's so morbid" and act horrified.

I want the best for my son, but I often feel I don't know how to provide that or even to find out exactly what it might entail.  I envision a future where instead of the world insisting that my son find a way to conform himself to the needs of the system, the system find a way to understand what my son wants and needs and the best way to help him be his own best person.  

His teachers and his support team at school don't have an easy job, I realize that.  I don't expect saints and martyrs.  And for the most part I believe that his teacher and the people who are supposed to be helping him really do care about his best interests.   I just wish it were easier for us to know what those best interests are.

 

 

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Our real lives

Not doing what I can't

Spilt milk

The laptop I bought on closeout for the kids resides on my breakfast bar. 

When its not being used to play Minecraft or  watching Justin Bieber and (shudder) Ke$ha music videos,  it becomes a resting place for one cute gray polydactyl kitten. Did you meet Hemingway yet?  No?  Here.  Readers, meet Hemingway. 

Hemingway showed up in our garage about two months ago during a several week cold snap when the outside temperatures were hitting single digits.  I opened the garage door to grab something out of the box freezer early one morning and a small furry gray shape went darting away from me and under the car.  It was small enough to be either a very small cat or a very large rat, and it was dark enough for me not to be able to discern which. (Yes.  I screamed.  No.  I am not ashamed.) 

I woke up SG who came out to help locate and identify our newest houseguest.  It took a little while but eventually we heard a very very tiny "meow" from behind the luggage.  Hard as we tried we could not catch him and couldn't get him to come to us, so we started leaving the garage door slightly open and putting out food and water for him.  We worried about his survival because he was so small, but every day the food we put out was being eaten, so we knew he was alive.  I finally got someone to loan me a live trap and we put the food dish inside it.

Three nights later we managed to catch Coco, who was extremely unhappy with us over it.  I reloaded the trap and forgot about it for a couple of days until SG went to get something out of the garage one morning and came back in the house with the trap full of a frantically meowing kitten. 

Now I've dealt with feral cats before and they are notoriously opposed to being handled, so I fully expected to open that trap and have a spitting, hissing, clawing, ANGRY kitten come barrelling out of it.  Instead, a little gray and white furball ran right into my arms, purring and rubbing against me as if he'd been waiting for me his whole life.  I suspect he was very cold and very lonely and happy to have someone warm to cuddle with.  He crawled up my shirt and it was then we saw his six-toed front paws and both SG and I knew he would stay with us.  The name choice was obvious -- Ernest Hemingway is one of history's more famous Polydactyl cat fanciers, having been given one by a ship's captain.  Polydactylism is a dominant trait, so that first cat became the founder of a large polydactyl cat colony.  Hemingway's estate in Key West is currently home to around fifty descendents of that first cat.  Polydactyls are thus commonly referred to as "Hemingway Cats."

(Hemi is the second polydactyl kitty to enter my life, and rather coincidentally, the first extra-toed kitty I had was also a gray and white boy I named "Crash Davis" after Kevin Costner's character in Bull Durham.)

Hemingway's origins are somewhat of a mystery to us.  We are not aware of any feral cat litters in the neighborhood and none of the neighbors reported a missing kitten.  He couldn't have been more than seven or eight weeks old based on his size, and his friendly nature isn't indicative of a feral litter.  Regardless, he's part of the family now.

Yesterday I had to stay home from work to get an emergency crown on one of my back molars.  Turns out 20-year old fillings have a habit of undermining the structure of your teeth, as I unhappily discovered at dinner on Saturday. 

Hemingway was snoozing on the lid of the laptop on the counter as he is wont to do nearly every day when the kids aren't using it.  If they leave the lid open he will walk and nap on the keyboard, which has mixed results -- either the laptop freezes up, which sends the kids into a frenzy when they try to use it later, or it sends out undecipherable emails to equally undecipherable addresses and opens odd websites. 

I managed to snag an appointment to get my tooth fixed, but when I went to leave the house I could not find my keys.  I spent a good ten minutes tearing the house apart looking for them.  As I was frantically searching the kitchen counters. I lifted up a sheaf of papers on the breakfast bar, startling Hemingway out of a sound sleep. He levitated straight up, then landed with scrabbling feet on the counter, knocking over a glass of milk that Race Car Man had left unfinished.  Now I not only couldn't find my keys, but a pool of milk was widening under the mouse, the laptop, my envelope with all of our tax paperwork and my Blackberry.  Heavens to Betsy! 

I clutched my Blackberry to my heaving chest, scooped up the laptop, gave it a cursory wipe, then threw a wad of paper towels down on the rest of the puddle and continued on my search for car keys.  I finally did find them on the workbench in the garage right next to the driver's side door of the car; I must have left them there when I got home from dropping the kids off at their bus stop.  I have no idea why I would have done that, except that I have been completely discombobulated ever since my tooth fell apart.  I was already late for the dentist.  After four hours in the chair getting my new crown installed, I completely forgot about the milk mess.

Last night when Race Car Man went to play on the laptop he gave me a round tonguelashing over the sticky mouse and milk-speckled lid which I had failed to finish cleaning.  Sensory issues and sticky things are an endlessly bad matchup and typically grounds for screaming exceeding the sound barrier, so I count myself lucky he was only Complaining Loudly. 

I wanted to tell him, "There's no use complaining over spilled milk," but I don't think he would have appreciated it.  At least the laptop still worked.

Not doing what I can't

I think I'm starting to get better at this grownup thing.  Perhaps, just maybe.

Race Car Man started a few weeks ago with a new therapist, this time one at a place whose clientele are people with autism (as opposed to a therapist who deals with autism among other things, which for us did not work so well).  I think its helping.  He's had more good days at school, he's starting to get homework again.  My ex had a schedule change at work that allows him to go to our son's classroom two days a week for a couple of hours which is fantastico.  If I could only find a way to make life outside of Minecraft even remotely palatable for this child all would be straight up and down.  You can't have it all. 

Amazon Girl also started with a therapist last week, as the doors of pubescent hormonal hell have apparently opened wide and beckoned her therein.  She's struggling emotionally and needs some support from an adult she can talk to about life, about her parents, about her brother -  which means a third party is required.  Fortunately the last therapist she saw, the one I really really liked, is still practicing and takes our insurance. 

Then on Wednesday nights I still have obedience school with TBone.  And Sundays there's church and then Amazon Girl has her riding lesson, and most Saturdays from here until the sun goes away in the late fall again, I have something to scheduled to do with my horses.  SG has guitar lessons every Tuesday and just got started with some group political thingamajig.  And so on.

Sometimes in between all of that we sit down for a few minutes and breathe and maybe fold a load of laundry.

Last week Race Car Man's therapist asked if we wanted to start him in her next social skills class.  "Sure, when does it start?" 

Next Tuesday. (Two days ago)

Its a class he needs, BUT - it starts at 3:45, just 5 minutes after he gets out of school, AND its a half hour ride away from his school.  And I work full time.  And my husband works full time.  And if I had some time to sit down and sketch out a plan it we can do it but Next Tuesday just does not work for me right now and I for ONCE in my goddamned adult life opened my mouth and said the magic words:

"I'm sorry but that doesn't work for our schedule right now."

I didn't even feel guilty about saying it.  I felt relieved.  I am doing all that I can do for my family and myself right now and I am not going to try and cram one more thing down our collective throats, not at this moment. 

There have been a lot of times in the last several years where I've felt almost all of my waking time was consumed with trying to frantically get everything done that I am supposed to do and failing miserably at it.  Its a horrible pattern - try to do more than you're capable of, fail, drop two or three of the balls you're juggling and then spend a month trying to dig out of the hole you've just created for yourself.  

Perfectionism just isn't going to happen for me right now.

There will be a point where our schedule will open enough to make the social skills class do-able for us.  It will happen.  Just not two days ago.  

Slow down. The tempo isn't as fast as you think it is.

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This dance

I was going to post about our awesome new dog Little Sister, the one I sweet-talked my husband into letting me adopt while he was on the road.  She's a Mastiff/Dogue de Bordeaux mix, so fairly big.  Instead, though, I am writing about a meeting I had this morning with  my son's teacher and principal. 

While we've had a lot of very good days since the medication change, the teacher has also seen an amplification of sensory behavior.  The day they used clay in art, he spent the rest of the afternoon obsessively washing his hands because he could still feel the clay.  His shirts bother him, his socks bother him.  Even though his focus improved, his anxiety worsened.  And then yesterday, oh yesterday.  Yesterday prompted today's meet and greet.

My son has three loves:  Video games, computer time and Kindle time.  Everything else in life is something that interferes with that time.  He hasn't yet been able to understand that notgoing to school isn't going to magically increase the amount of time he gets to engage in his digital universe.  He resists doing schoolwork of any kind either at school or at home.  Once he is finally convinced to do the work, he finishes it in mere seconds.  If he brings home a book to read that he has already read once at school he simply recites it to you without even opening it.  (They really need to challenge him more)  He loses more play time by resisting than he gains, but he's not yet gained the ability to recognize the cost of this tradeoff. 

Yesterday afternoon he had earned all but the last two letters he needed in order to get his evening dose of post-homework electronic joy.  However, he was asked to complete some tasks that he refused at school.  Sensing he would not earn enough letters to be able to play Skylanders Cloud Patrol on my Kindle Fire, he attempted to rip pages out of his binder, which is his daily communication between home and school.  Then he tried hiding it so his teacher wouldn't be able to find it.  When it was time to go home, he cooperated to go in line, but once on his bus he refused to sit down.  His teacher ended up having to ride the bus with him in order to keep him in his seat. (I'm not sure why the aide on the bus wasn't willing or able to do this, but I'm grateful that his teacher cared enough to keep him safe.)

Needless to say, we all sat down this morning to review what the school is doing and how we can best support Race Car Man. 

We're adding a couple of options to his daily sheet of letters earned.  This way if he ends the day without having gotten all of them, he will have a chance when he gets home to earn one or two more at most.  Doing his homework without fighting is one option, eating his dinner and putting his dirty dishes away is another.  This way he still has the opportunity to turn his behavior around, and doesn't send him home without any hope of playing his beloved games.  Even though he can eventually calm down enough to just play with his toys, it takes a while to get him past the attitude that life no longer has meaning.

We'll also talk to his doc about med changes next week, and we're going to work together to come up with a reasonable reward system for cooperation in completing tasks at school and homework at home. 

I write all this with optimism, assuming that we will see a change for the positive in his behavior. 

It is such an intricate dance, trying to anticipate the way I ought to move to meet his needs.  One miscalculation and I've mashed his poor feet without meaning to.   There is no formula for the perfect mix of what keeps Race Car Man's engine humming.  We just have to measure things and try them and change them again if they don't work.  The pattern of this dance just keeps evolving and changing, and I must do so as well so that we don't lose step with one another.

What we pass along

Parent-teacher conferences were last week, and all things considered, I am happy with where the kids are at.

Race Car Man continues to have areas of concern around his ability to control his reactions, but the biggest issue I see with him is a real streak of craftiness when it comes to getting out of work.  I think he sees his hierarchy of needs in very simple terms:

Good:  Gaming time

Bad:  Anything that interferes with gaming time

You know, like meals and homework and baths and those really awful times when mom bans all electronics and locks the kids OUTSIDE.  (I'm only joking.  I don't lock them out.  At least not after the first 10 minutes.)

What's super frustrating about his report card is how he's testing AT grade level on everything.  Except that I know for a fact he's capable of doing math well beyond his grade level and in terms of ability to read he is also beyond his grade level.  Reading comprehension may be an entirely different animal, as he just doesn't see the world and human interaction the same way the educational system would like.  Still, there weren't any surprises and I am satisfied with that.

I wasn't sure what to expect from Amazon Girl's conference.  At our last psych appointment she complained about being distracted a lot in class.  She was afraid she wasn't understanding as much math as she is supposed to because she doesn't think she's listening well.  I hadn't seen any homework come home that indicated she wasn't understanding, but at the same time, I half expected to walk out of her conference with a referral slip for a math tutor.  Much to my happy surprise, Amazon Girl is doing spectacularly well in school.  Her teacher thinks she's an absolutely delight, and her art teacher wrote that she is "exceptionally creative" in the comments section of her report card.

This morning when I opened her backpack to put her lunch in it, I noticed at her binder was so full of papers that it could barely be zipped.  As I periodically do, I went to work sorting and removing the completed assignments and reviewing her current projects.   In doing so, I found a group of study sheets about our presidential elections.  One of the sheets asked the students to pretend they were running for president.  They were asked questions about what qualities they thought were important for the president to have, who they would choose as their running mate, what their campaign slogan might be, and what planks they would run on.

My daughter, my Amazon Girl,  wrote that her primary issue would be to teach people that "Its OK to be gay."  She went on to say that people needed to learn that we need to accept each other and our differences and make sure that everyone gets the same chances no matter what. 

This is not an issue I've heard her talk about, but its an issue that's been on our televisions and our radios and a subject of adult conversation in our homes this past election season.  Washington voters were asked to approve or reject SB 6239 which extended marriage in Washington to include gay and lesbian couples. 

My ex and I certainly have our issues, but we both feel very strongly about the rights of all people to be treated with kindness, dignity and compassion.  As adoptees under the closed records system, we both have an inkling of what its like to be treated differently because of the way we were born.  We are both advocates of equality for all regardless of things like race, gender, sexual orientation or religious beliefs. 

When I consider the things I want for my children I would have to say that their happiness tops the list.  Beyond that, I don't care if they are doctors or gas station attendants.  I don't care if they are gay or straight so long as their relationships are mutually loving, supportive and respectful.  While it would be nice if they share my faith, I happily accept that they will form their own beliefs in their own way and their own time.  What I DO care is that they grow up with a core value system that includes acceptance, kindness and compassion for other people.

Despite my failings as a person and a parent, my daughter will carry on the mission of grace and love that I consider to be one of the highest callings we as human beings will ever know.  I could not be more proud of her than I am at this moment. 

 

 

I Need Some Wind for my Sails

Its the end of another week and I am so pathetically grateful to not have to get up tomorrow and put one foot in front of the other while pretending I have it all together I could cry. 

The stress of fending off the world seems to be cumulative, and yesterday I got the good/not so good news that SG might be staying longer on this Nebraska job.  Yay, because its more money into the pathetically empty coffers, but really, BOO because he won't be here for Thanksgiving and I'm so lonely and so tired of dealing with everything and not having my husband at home to sit down after a long day and talk to over a nice glass of wine.  I still have the glass of wine, but the dogs are less interested in hearing about my day than they are in having their dinner RIGHT NOW PLEASE.  If it wasn't for the evenings I get to stop at my parents and visit before I take the kids home I think I would give up the attempt to stay sane.

My struggles pale in comparison to what's happening over in New Jersey and the outside buroughs of New York City, so I should quit complaining.  No matter what's happening in my life, there's someone somewhere dealing with something a hell of a lot worse.  See?  Mindset changed.  Gratitude abounds.

Mr. Race Car Man had a good start to his school year, but has been struggling the last few weeks.  His good days still outnumber his bad days. Last year he had to earn the letters K-I-N-D-L-E by displaying expected behaviors.  If he earned all six letters, he got to either play on my Kindle Fire or play games on the Wii.  This year, since he's older and has gotten better with his skills, his teacher upped the ante and now he has to earn the letters P-L-A-Y G-A-M-E.   If he doesn't earn all eight letters he doesn't get Wii at my house or Playstation if he's at his dad's.  Since he's absolutely mad about gaming, this is a very big incentive for him to master his behaviors and his responses.  He earns his games more days than he does not, but the days he doesn't are really tough days, not just for him but for his teachers and classmates.  Monday morning he decided to run away rather than get on the bus, and my friend Debbie who watches them in the mornings, the aide from the bus and my daughter had to go on a merry chase around the neighborhood to catch him.  The upside of having a very tall and strong daughter is that she was able to nab the little turd and carry him on to the bus.  He then went on to have a very rotten day at school.  I hate those days, because he is so upset and fixated over over not getting to play his games.  Eventually he can be distracted, but he's got to go through his process of coping and folks, it ain't fun.  I feel bad for him, for his classmates, his teacher, and for those of us at home with him.

Fortunately we already had an appointment scheduled with our psychiatrist for Tuesday morning.  One thing I like about our psych is that he doesn't just ask me questions, he asks my child questions and carefully responds to him.  Throught a very calm and methodical interview, we were able to piece together some of the things that were going wrong for Race Car Man at school.  He is having great difficulty focusing in class.  He is very easily distracted by other students physical and verbal behavior.  This frustrates him greatly and makes him more likely to have difficulty controlling his behavior.

The psychiatrist made a med adjustment which we started immediately, and so far it seems to be helping.  Two fantastic days in a row doesn't mean as much as a couple of good weeks, so I'm not going to commit to saying "it worked!" -- but I'm encouraged. 

He can be such an engaging child.  A lot of adults we encounter who don't know he has autism, if he's having a good day, are usually charmed by the way he interacts with them.  He loves to explain things, and with his extremely detailed memory and his love of reading information books rather than fiction, he can actually converse about a lot of things.  Combined with his extensive and very precise vocabulary, he seems far beyond his years. 

I wish he'd eat, though.  We weighed and measured him at the doctor's office.  Since last school year he's grown three inches but gained no weight whatsoever.  I can't find pants to fit him that don't leave his ankles and half his shins exposed.

One of his favorite new activities is to brush his sister's hair.   Its almost to her waist now, and I found a special brush at the local beauty supply that lives up to its claims of being "ouchless."  He will sit behind her in the chair at my desk, and while she plays a game he brushes her hair.  Whenever they do this my heart just melts.

So things aren't as good as they could be and they aren't as bad as they could be.  I just feel drained right now and unable to cope with even the smallest setbacks.  Maybe Race Car Man isn't the only one who needs a medication change.

 

Passages

Over the years I've fallen in love with so many blogs.  Every so often I'll see someone I really look forward to reading stop posting with any regularity, and I wonder if they're OK, if this is the beginning of the long decline to the end of blogging altogether or just the silence while they weather a crisis or a dry spell.  When I first started blogging I was so enthralled with the form and the media I couldn't imagine ever wanting to stop.  I'd see someone I really like put their blog on haitus or take it offline entirely and I'd be so perplexed...why would anyone want to go silent like that? 

I also remember being a woman without children and I'd watch people who were parents say and do certain things and I'd be absolutely flummoxed why parents were so crazy.  I, after all, would never say or do such things.  I'd never buy my kid a happy meal just to make him stop crying for one goddam second.  I'd never fill my kids rooms with plastic crappy toys or ignore them just so I could have one minute of sanity in the bathroom or let them wear clothes made in third world countries by indentured servants to the smiley face or...and so on.

I gather this is the standard process for most people.  When something is new or not yet experienced, we bury ourselves under the weight of uninformed opinions and find ourselves surprised when we one day find out just how little we actually know about anything.

The good news (depending, I suppose, on your point of view) is that I'm not planning on falling off the web into that large graveyard of discontinued blogs.  The bad news, if there is such a thing, is that I have no current urge to write much at the moment and no idea how to solve that problem.  Or even know if that's actually a "problem."   My health has been a bit difficult of late, work has been very challenging and stressful, and the things that need doing far outnumber the hours of time available.  In truth, my attitude about blogging and bloggers has changed dramatically over the last year or so, and my reasons for writing, such as they were, are no longer the same.  My goals for blogging have changed significantly, and my self-knowledge of my place in the world of blogging has clarified.  I'm ok with where I am and who I am, and I'm less worried than ever about accidentally offending anyone or even whether or not anyone "important" is reading, because I DO get, frankly, that everyone who takes the time to come here and read my continuing attempts at writing has given me a great gift of time and attention, and I'm grateful for every single one of you. 

Lately I'm in a state of wonderment at the ability life has to be simultaneously amazing and awful.  Or joyous and depressing.  Or stressful and flatlined.  Pick your metaphors, they all fit. 

My friend Debbie, who has taken the reins over organizing my barn, my pastures, my horses and trying to convince me to implement ten thousand fabulous ideas all at the same time, says constantly "Its amazing how you're just so normal!"  I think she has it ass-backwards.  I think we get along really well because on a certain level we have brains that work the same (wrong, not-normal) way and we don't get frustrated by the tangential nature of practically every conversation we've ever had.  Over the course of the summer we've repaired stall doors and expanded so that I now have three working stalls.  When there was only one stall functional and three to four horses being fed with different requirements for supplements and each with the right to be able to eat without someone else chasing them away from breakfast, things were a little crazy out there.    She's also picked my dry pen clean of weeds and rocks.  She's found someone to haul away the manure pile.  She's found someone to put up wall racks for tack and someone to paint.  She's cleared the area behind the barn where all the scrap lumber and fencing materials used to get tossed (don't look at ME, the old owners started it, I just kept the tradition alive) and put down pallets and tarps and quadrupled our ability to store hay.

She also drives my husband a little batty because he is used to being along much of the time and she is by nature a very chatty person.  I can tell he likes her though. 

The kids this summer...what an amazing change in both of them.  My daughter is getting taller and more beautiful by the nanosecond.  She's taken two sessions of swimming lessons, gotten to level three and only needs to perfect two things to get to level four.  She's at that stage of transformation between little girl and startling long-legged tween and she's just stunning.  That's not even subjective mother-pride.  Its just God's honest truth.  What I find fascinating is her ability to verbalize her understanding that she knows she's growing up but she's not in any hurry to do so.  "I just want to be a kid, mom.  I don't want to grow up yet," she'll say, and my heart melts with love and pride and bittersweetness all at the same time.  She will grow up whether I will it or no.  I know that little girls can change dramatically as they age, and I hold onto the firm hope that the person she is, the things about her that make her so awesomely her will stay intact.   She gets more out of my reach every day, and as I let go with a heart that strains under the hope and fear, I simply pray that God lets life be gentle with her for as long as possible.  In les than two weeks she will be a fifth grader. 

My son is learning to negotiate.  His anxiety and ODD issues make certain things difficult.  He hates taking showers because he doesn't want to get any water in his eyes, but baths take too long and his anxiety informs him that soaking in your own dirty water is just YUCK.  So showers were always a struggle, until he came home from his dad's one weekend and announced that he and his dad worked out a deal:  Daddy bought him swim goggles and now he doesn't get upset in the shower.  I'm not sure who thought up the idea, but hot damn if it hasn't made getting the little dude clean a much less stressful event.  Hallelujah and pass the cornbread!  He's gotten tons more compliant about taking his meds, and he's learned to negotiate that as well.  We've also had to learn to listen when he starts to refuse things - sometimes we have a hard time remembering that his anxiety makes certain things far harder for him to tolerate than we can understand.  

SG has been a stay-at-home stepdad all summer and has had both kids pretty much every day of the week since their dad and I are both working, and I really believe his even-tempered nature has had a positive impact on both of them.   Their dad and I both tend to moodiness, and I sense that our unpredictability has been stressful for them.   They have evened out much, both of them, they fight with one another a lot less, and its clear that they both adore their stepdad.  School starts soon, so my husband will be joining the ranks of the employed unless I either get a highly unexpected and very large pay raise or I actually buy a lottery ticket and it turns out to be a winnah.  He's been my rock the last month or so while I've struggled physically and mentally.  That's love for you.  I am not afraid to admit that my patience is thin and my attitude bad, and he has endured it with a great deal more grace than I would likely exhibit were I in his shoes.

We lost Mojo kitty this summer.   He disappeared in the spring for a few weeks and when we finally found him he was so skinny and deteriorated we weren't sure he would make it.  He recovered for a while with special food and supplements and monitoring, but then he went suddenly downhill and we had to make the tough choice to say goodbye.  I suspect it was cancer.    He's joined Hercules, Lady and our little old banty hen Cin-Cin under the tree out in the back pasture.  I think I've learned pretty well the last few years that people and animals too often leave our lives far sooner than we are prepared for them to do, and it reminds me to make a point of taking time each day for each animal to have some attention, for me to be more vigilant about picking up the phone, and to treasure every opportunity to play with my children and create memories to sustain me when they have grown up and begun lives of their own.  It will happen sooner than I think.

How's your summer been so far?

 

Do Re Mi

When I was very little, a neighbor died and gave us a piano.  My mother was the only person she knew who played, and so she made a specific bequest in her will.  I took to it like a duck to water, and it wasn't long until my father had to draw a line in the sand:  Either that kid gets lessons or I get out the chainsaw.

And so began my first passion:  music.  We had that piano until I was well into college, and I took fourteen years of lessons on it.  I love to play.  I'm not a concert-level pianist, I lack the true gift for that, but I can sight read like a house on fire and I can sing.  When horse therapy isn't possible due to weather or timing, music therapy is where I turn to ease my troubled soul.

As a kid whenever we had a dinner party my mom would sit me down at the piano and I would play all of our favorites out of a big hardbound book of standards.  I knew most of the popular songs from the first and second World Wars and every hymn in the Episcopal hymnal.  Everyone would sing along, and no evening was complete without a round of When Irish Eyes are Smiling, during which my mother would inevitably cry as it is the song that reminds her most of my grandpa who died when I was seven.

There has always been a piano.  Until last year.  When my divorce was final, my ex got the piano we'd been given by his parents.  It was from his family, so it was only fair, but it was painful for me as I was the only person who for a long time ever played it.  When he finally arranged to pick up the household furnishings that were his, the one thing I hated to see go was that piano.  Christmas last year was the first time in more than 40 years I didn't have a piano to play and sing Christmas carols with.  Oh, I made do with my guitar, but it really wasn't the same.

A home just isn't home to me when it doesn't have a piano.

A few months ago I found an old Vose & Sons cabinet grand on craigslist.  Over 1,000 pounds, with a rosewood cabinet and original ivory keys, it had been in the owner's family since the day it came new off a Boston showroom floor in 1890.  It hadn't been tuned in nearly two decades so it was hard to tell if it was going to be able to be put into playing shape, but he only wanted $350 for it and so we brought it home.  It cost more than twice that much to have it moved to our house and to have it repaired and tuned.  It had a cracked base stringboard, a broken string or two, and all of the pegs needed to be reset and glued in so they would hold tune, but it was worth every penny.  Once it was repaired and set back on its feet, the beautiful tones it produces told us we had made a good choice.  Its holding pitch and with those long strings I can really crank up the v0lume when I need to blow off steam or raise the roof with joy. 

Our piano is worth so much more to me than just the cost of buying and repairing it.  Like my horses, piano is one of the things that I do that makes me feel like my puzzle piece is in the right place.  We make a lot of music in my house, and it is time for the torch to be passed to the next generation. 

My kids got their first piano lessons yesterday.  Its hard to put words to all that I was feeling and thinking of as they each sat at the piano and learned to find Middle C, to identify first through fifth fingers on each hand and to start practicing their first scales.  Amazon Girl plays her scales in a measured temp, wishing to get each note perfectly.  Race Car Man wants to be fast when he has it right and asks many questions about how the keys and the hammers and the felt and the strings work.  They both picked up on the basics pretty quickly. 

I am filled with pride, wistfulness, deep joy, a sense that everything is right with the world. 

We have a piano.  And we are playing it.

 

 P.S.  The photo is of a piano at the recording studio where SG laid tracks for his song.  Mine is prettier.

He's more than he seems

Picking up Race Car man after school a few weeks ago, I chit-chatted with his teacher.  I really adore her, she is so invested in her students and in helping them learn the skills they need to succeed.  I had to disagree with her on one point though:  my son is not "finally reading at grade level."

I suppose technically it is considered to be at grade level if you can correctly read a story and answer questions about what the characters felt and thought.   Kids with autism, though, have difficulty with the structure of interpersonal relationships and understanding the thinking of neurotypicals.  It is human nature to assume everyone thinks the same way you do, and my son is no exception.

No one seems to get it:  My son is NOT a  first grader.  My son is a 40 year old nuclear scientist in a miniature body.

On a recent trip to Idaho for Bill & Angie's wedding, he stole my phone and wandered around taking pictures.  I found him taking pictures of his Skylanders, and he clearly was fascinated by the play of light and color and the reflection of the translucent green plastic under the toys, because look at these:

He's got such a unique way of looking at things -- even toys.

He surprised me a few weeks ago.  My daughter loves to dress up.  The hardest thing about shopping with her is that she likes every pretty dress that she tries on and wants me to buy them all.  That and she always wants the sparkly ruffly dress that's really the most suited for a Christmas Recital even when the occasion we are dressing for is Easter or an outdoor summer wedding. 

I took both the kids shopping for new outfits to wear to my new nephew-in-law's wedding Memorial Day weekend.  Amazon Girl's choice of dress was spectacular, but I really did expect resistance from Race Car Man when it came to picking out something appropriate. 

We walked into the boy's section at Penney's and I started to steer him toward the khaki shorts and polo shirts.   He caught sight of the boys' suit section and it was GAME OVER.  From the minute he saw the shirt/vest/tie/pant combination, he was interested in nothing else.  Wouldn't try on anything else.  It was that or nothing.  So of course, we got him the suit. 

Tell me he doesn't look a little bit like a miniature Darren from Bewitched:

Striking a pose with big sister:

                    No outfit is complete without your Batman lunchbox.

And my personal favorite:  PHOTOBOMB!!

 

 

 I suppose there is some level of competitiveness even within special needs parenting.  Of course I want my son to read at grade level.  Everything that he accomplishes that helps him navigate his way through life is wonderful.  But I guess there's a part of me that wants everyone to see the things I see in my children, to look at them through the incredibly loving and terribly biased eyes of a mom.  Yes, he can read "Dick and Jane" at grade level.  But he reads the instructions for my lawn mower like a SUPERSTAR.

I don't even know where to start

I've been sick since a week ago Saturday and there seems to be no end in sight.  I don't know if its a cold or flu virus or just allergies working overtime and making my lungs and throat all nasty.  I think I have to go to the doctor if it continues much longer.  In the meantime, I've got a voice that's a combination between Brenda Vaccaro and a three-pack-a-day smoker.

Nothing terribly remarkable happened through most of last week, but then we got to Thursday and it got all lively around here.

The fun began when my adorable, darling son got a two day suspension from school for hitting someone.

Race Car man is the wunderkind of deciding what he wants to have happen and then doing whatever is necessary to achieve his goals.  He had a substitute teacher on Thursday, and although this sub has had reasonable success with him in the past, he decided he'd rather be at Grandma's playing with toys.  He started acting out in class, and whenever he was redirected he just upped the ante, to the point he had to be removed from the classroom.  After ending up in the office hecontinued to escalate.  The school is well aware that his preferred consequence is to get to go home from school, so we work together on keeping that as the DFL* option. When he realized he wasn't achieving his goal, he got physical.  Not only did he hit an adult, he stomped on her foot for good measure. 

Wish granted.  Off to Grandma's you go, son, do not pass GO and do not collect your two hundred bucks.

Its not exactly fun being the parent of the kid who's bullying and hitting others. 

I make a point of apologizing and I make sure I let the school know that I support their efforts to maintain order and discipline and to keep students and teachers safe.  I communicate to them the consequences I will be applying so that they know the behavior will be addressed.  I find that its important to reassure teachers and administrators that this child has active and involved parents and that this isn't a problem they are flying solo in dealing with.

And then I knuckle down and institute consequences for my kid.  Which means NO Skylanders, NO computer, NO TV.    He has to earn them back by making good choices with his behavior at home and at school. 

His mind doesn't yet process human interactions in a way that helps him understand that hitting is wrong.  He can grasp that its something we don't want him to do, but in his brain its only because we want to prevent him from getting his way.

It has been hard to watch his hysterical sobbing over losing his Skylanders.  But I need him to learn this lesson.  He can't be a successful adult if he just hauls off and clocks people who piss him off at work.  I want him to know that we all feel like doing that at times, but that just because we are frustrated doesn't mean we can hurt others. 

So Thursday was a definite low, with my Rocky wannabe and the associated not-fun of imposing consequences.  I tell you, though, sometimes its like the universe wants to make it up to you when things suck, because Saturday and Sunday were amazeballs.

Michelle and I went to a clinic with a new trainer we had heard about, and holy crap, you guys, what a great day it was.  I've found as I get older that I don't have as much confidence on my horse as when I was young.  I'm less inclined to push him hard and I'm far more cognizant of not wanting to get hurt.  If you want to improve at anything, though, you need to push past your comfort zone.  The right trainer is the one who wants to see you and your horse succeed, who can judge your skill level accurately and assess your deficiencies, then find ways to teach you what you need to know and ways to get you to do the things you're capable of but scared to try.  Tim is all of that and more, and it was such a blast to learn from him.  Totally worth the money and he probably should be charging more.  I will be going back to learn more as soon as possible.

Sunday, though, was the best day EVER.  Why, you ask?

MY HUSBAND CAME HOME.

If you hate the mushy junk, TURN YOUR EYES AWAY.  My house is full of the mushy junk.  The hugging, the hand holding, the smooching, the can't-get-enough-of-you, you smell just like I remembered and I thought I'd die missing the feel of your hand on the small of my back just like you're doing right now.  

The dogs are happy, the kids are happy, and I am over the moon.

He's home.

 

 

*dead fucking last