Barnmaven

The Language of Special Needs

I got a text this weekend from a friend.  She is a young adult "on the spectrum," as it were, and she had somewhat of a Facebook argument with another woman over a meme the lady posted about Autism.  My friend didn't like the implication that autism is not a disability but simply a difference and made her opinion known.  She wrote about the different issues children and adults can and often do have when they have an Autism Spectrum Disorder.  She responded from her own experience, in all earnestness. In response, apparently, the original poster called her a "bitch" and wrote that autism isn't a serious issue and said people need to stop complaining about it.

I have such a depth of feeling about this.  Its an internal conflict in a lot of ways,  because technically, my daughter's bipolar and ADHD and my son's Autism and associated disorders most certainly will cause them difficulties neurotypical people don't have or ever have to think about.  On the other hand, I think both of my children are capable of doing just about anything they set their minds to, and I refuse to let them use their issues as a crutch or an excuse.  Just yesterday, my daughter remarked in passing that her brother couldn't keep himself from fighting because of his autism. 

I told her,  "I'm not sure I agree with that.  Do you think he gets to just fight with people without consequences?  I don't.  I think he has to work harder than other people to control his behavior, but he doesn't get a free pass to just behave any old way he wants to, honey."   She thought about this.  "So its just like I get in trouble for fighting with Race Car Man even though I have bipolar?" 

Exactly.

On one level, I think that a cure for autism isn't necessarily on the horizon.  And no, for the record, I don't buy into Jenny McCarthy's assertion that her son has been "cured" of autism.  I think there are a lot of therapies and treatments and foods and supplements that can help kids and adults with autism function better and more successfully, but we don't know enough yet about the causes of autism and the inner workings of the autistic brain to be able to have a cure.  Should we be funding research for a cure?  Absolutely.  But at the same time, we need to be spending our time and our dollars making sure that we give kids with autism the skills they're going to need to live as adults with autism.  We need to be cautious of the words we use around autism so that we are not being derogatory or having pejorative overtones about a community within our larger community.  People with autism don't necessarily want to hear about the ways they are different -- they are looking for the ways they can fit in.  And frankly, some of the characteristics they bear as a result of their autism are truly gifts.   

I don't think you can look at someone like Temple Grandin, whose difference in executive functioning make it possible for her to understand animal behavior in a way that most neurotypicals can't begin to understand, and think of her autism as a 'disability.' 

There are a lot of conflicting opinions in the autism community about the language that we use and the way we portray people who have autism.  A lot of advocacy groups and adults living with autism are extremely opposed to the tactics of the group Autism Speaks.  The opposition stems from a number of reasons, primarily because Autism Speaks doesn't include a large enough percentage of adults with autism in their executive leadership.  Many parents and families of people with autism and many adults with autism also take issue with the way autism is portrayed by Autism Speaks.  They feel personally denigrated by videos and messages that talk about how terrible life is for families of kids with autism, by descriptions of their more challenging behaviors and thoughts.  There are hundreds of thousands of adults with autism living successful lives, managing careers and marriages and raising children. 

There are two sides to every coin, and autism is no exception.   The divisions within the autism community are understandable, impossible to ignore, and perhaps uncrossable.   Because autism is a spectrum disorder with greatly ranging degrees of affect, everyone's experience will be different.  Because no two people react to the same stimuli in the same way, one person's response to dealing with autism and their perception of how it impacts them will vary greatly from anothers. 

I don't believe autism has ruined our lives, I just think autism has given us some challenges we might not otherwise face.  But who am I to tell a mother whose marriage has failed and whose non-verbal child is a frequent eloper or who is physically violent that she's wrong if she feels differently than I?  Just as I would want her to understand where I'm coming from, I sure as hell bet she wants me to walk a mile in her shoes, too.  I also bet that there are times she wishes someone would find a cure right this fucking minute for the behaviors that make her life incredibly difficult and stressful. 

We take issue when a mother with an autistic child kills her child and then takes her own life.  We don't want the world to think that autism is this terrible, dark thing that can't be overcome.  We, as parents, don't want anyone to look at our children and think these things about them.  We want people to see the beauty and the strengths and the uniqueness in them.  Or at least, I suppose that we do.  But I don't know what the mother whose son was denied school placement was thinking.  I can't speak for her at all.  Clearly she was overwhelmed, probably under-supported, and desperate.  The mother of the adult son with autism was said to have a very loving relationship with her son.  What were her thoughts as she committed this terrible act?  We will never know. 

Parenting a child with autism or pediatric mental illness can be hard, terribly hard.  For most of us it is NOT the end of the world.  Having autism and learning to cope with a brain that is not wired to function in the typical world can be anywhere between 'okay' and 'devastating,' depending on the individual and their place on the spectrum and the support, resources and therapies available to them.   Holding your bipolar child's needs close to your heart as you deal with them on the days they are unable to be loving or likable isn't very easy. 

We can't forget the families of the severely autistic individuals who rely on lifelong care.  As with any condition that renders a person unable to take care of their own basic needs, life becomes far more challenging and difficult, stressful and scary.  But those things don't have to mean that the person with autism and their family don't also have love and joy and wonderful times together.   The thing is, we can't deny that at least for some families, the good days are scarce and the bad days are the norm.  Some people aren't as capable of handling that as others.

Is it just too pat to say "Life is what you make it" ?  Life isn't fair, certainly.  We are all born with different abilities, strengths and weaknesses.  As humans we have the same rights, but we don't all have equal capabilities.  We must acknowledge this basic fact and work upwards from there.  My kids have stuff they've got to overcome, and sometimes that's really hard to cope with.  But cope with we must. There's more than coping, though.  We work to meet challenges and we celebrate our successes.  We learn from the bad days and we are thankful for the days that are good.  We cry, we rage, we beat our fists on the concrete, and then we get up and walk out the door with our hopes intact.  Some of us, though, throw in the towel.  Some of us don't see the up side.  Their experience doesn't invalidate my own; nor mine theirs.

Both extremes and neither. 

Can we live with that?  I don't think we have a choice.

 

 

 

On trying to have the right attitude

I am alive again.  Sort of.

My new doc has diagnosed me with low thyroid and last week I started medication.  Whether it was the 80-plus degree weather all weekend or the new medication, my energy kicked back into gear for the first time in a long time.  I did dishes and laundry, cleaned floors, took the dog to the vet,  pulled the mats out of the horse trailer and scrubbed them, bought horse feed, cleaned stalls, groomed horses, took the kids to the circus and had dinner with my parents.

Last night our hot weather broke with a vengeance.  The Eastern Washington sky lit up like a Christmas tree for several hours, with lightning and thunder from all sides.  As the colder air moved in, we also got some seriously heavy winds at the house.  Usually the storms don't bother the kids, but for some reason this one had my son feeling anxious and afraid.  I don't often let the kids sleep in my bed, but if ever a night called for a sleepover with Mom, this did.  The storm kept up well past our bedtime, but even after it finally quieted down enough for us to sleep, the jostling and the Move over!'s meant none of us slept much. 

It made for a tough morning.  Both the kids were downright buggers.  I was really late for work, as a result.   Nobody wanted to take medication, nobody wanted to get dressed, nobody wanted to do much of anything except fight with everyone else and make a lot of racket.  And its hard when you haven't gotten enough sleep to be very cognizant of the fact that my children are not struggling because they want to make my life miserable, my children are struggling because they are exhausted and its even harder for them to cope with life's demands than it is for their mother.

It was easy last weekend to have a good mindset about SG being gone.  I felt good, I was getting things accomplished, the house looked good and I was managing it all without too much struggle.  This morning had me singing a different tune.  This morning I felt resentful and tired and frustrated with being what I've come to think of as a "married single." 

When did I forget all the stuff I learned when I really was a single mom?

I had day after day after day just like this morning without the hope of an end in sight.  It was HARD.  I didn't think for one second I would ever have a partner in my life to share the burden with me.  It was not a truly irrational assumption to make that there aren't many people out there who would be willing to partner up with a middle-aged woman with two high-needs/special-needs children, an aging house, a mountain of debt and more animals than hitched a ride on the ark. 

I read some of my blog posts from those days and I am surprised at how much I was able to put a positive face on things, because I know exactly how tired and hopeless I often felt.

When I met SG I was really hesitant about getting involved with someone.  First of all, I didn't really think I was by any means a "catch" and I wasn't sure he really understood what he was getting into.  Second, I didn't want to burden a partner with issues that had nothing to do with him.  We've had a lot of discussion around what things were mine to deal with and what things were "ours" and that I didn't expect him to feel responsible for things that weren't his responsibility.    But there's never been a moment where he's hesitated to step in and shoulder the load of my kids or my animals or the shitstorm of chores this rural lifestyle requires.  And the more he does that, the more I come to rely on him being here to keeping doing it.

Because he helps so much, the contrast in my life between "together" and "apart" is about as stark as it can possibly be.  I'm not dependent on him to survive, oh hell no.  I've done this before, I'll do it again.  There's a difference between being dependent on someone else and knowing you can depend on them. 

If nothing else, our situation allows me to be grateful for how much of a good partner SG is to me and to realize how generous and loving a man he is.  It also reminds me not to complain to much about having to do the heavy lifting on a temporary basis, because there are millions of moms and dads out there who are doing all this and more and they don't have a partner to help them, ever, or parents who can pitch in like mine do.  They may not have the good fortune of an employer like mine, who not only says they value families, but put their money where their mouth is and don't make a hard situation even harder by punishing me for being late when days like today happen.

So I'll acknowledge that today I am tired and dragging and feeling frustrated as a parent and a partner, but that things could be a hell of a lot worse and I really can't wait until my husband comes home.

 

 

 

On love, blended families, and housework

 

Last year SG and I were a happily dating, newly-in-love couple.  Valentine's day, on my night without the kids, was so romantic.  Being an old-fashioned kind of fellow, he thoughtfully brought me a lovely box of candy and a bouquet of flowers.  So sweet.  As I recall, I gave him a book on some kind of tantric-sex thing.  (And now you know why he loves me so much).  We had a lovely dinner at a local Italian restaurant and listened to a local couple playing guitar and singing ballads.  We played footsie at the table and we stayed up way too late doing things I can't mention in public. 

A year later, we're married, parenting a blended family, working the kinks out of who's responsible for what, and marveling at how, amidst the chaos, we manage to find time for lovely kisses and murmered promises for later after the kids go to bed.  And we do.  Find time.

He's home right now, getting ready to leave for six weeks on a road job, and then starting a new job in town after that. 

We have discussions about the housework and what's a fair split of chores.  I feel that since I'm the one working full time, while for now he's home, 90% of it ought to belong to him.  He doesn't disagree, but frankly he's not the most efficient housekeeper I've ever had.  And reluctant to boot.  I don't blame him, if I have the time to do other things, the last thing I really want to do is clean toilets and sweep floors and fold laundry.  I think we both have frequent wet dreams about when he's home from this next job and working full time and we win the lottery, having enough money to maybe pay someone else to come in and do the cleaning. 

Until then though, SG is the one who's supposed to be doing the bulk of it, but frankly not getting much of it done.  Last Monday I thought maybe making him a list of the top priority items would help. Six days later, Sunday, and about half the list is still waiting to be tackled.  I did not mention, and likely do not need to at this point, that efficiency is not SG's greatest strength.  There's always a Mises Institute lecture to be listened to, people on Facebook need to be argued with, and Words with Friends (and him being beaten mercilessly by my sister) beckons alluringly.

I went off to go on a lovely trail ride late Sunday morning and then ended up doing errands and not getting home til dinnertime.  I hoped - truly hoped - that I'd come home to dinner and a clean house.

Not so.

My house was a disaster, SG was completely frazzled and chaos abounded.  "I don't know how you manage it when I'm not here," he says, "every five minutes there's an interruption.  I just lost a whole hour!  Race Car man wanted a sandwich so I was in the middle of making that and then Amazon Girl sliced her finger open and there was blood everywhere and while I was in the middle of taking care of that T-Bone managed to steal the half-done sandwich off the counter and then Race Car Man threw a fit about not getting his food in a timely manner!  I'm exhausted!"

Heh.  Welcome to my world, babycakes.  I tried not to be too obvious about the laughing.

Its not too often he gets left with them for the entire day.  And to be truthful, not every single day is THAT chaotic.  But those days are far too frequent in my house, and when we have them, it IS exhausting.  Poor guy, after that he ended up staying up almost all night working on his paperwork for the road job that was due first thing Monday morning.  I got up at 3 am and he was still struggling getting the scanner to put the 60 pages of required information into one document instead of 60 documents.  (As an aside, if you want to work in the nuke industry, be prepared to provide exhausting details about every place you have worked in the last ten years including exact dates and addresses, every place you've lived for more than three months in the last ten years, your shoe size, IQ, everyone you've ever slept with or dated or even looked at sideways on the bus  and whether or not you hate your mother. Those people give a whole new meaning to crawling up your ass with a microscope.  One thing's for certain, I don't believe I'd ever be able to get security clearance at the plants he works at.) 

I felt bad for him, so I got up and helped him get everything scanned and sorted and emailed out.  We crawled back into bed at 4:30 AM, me to get one more half hour of sleep and him to get two hours before he needed to get the kids ready for school. 

There's just no time, sometimes.  And now its Valentine's Day, and its my week with the kids, so there will be no romantic date at a nice italian restaurant with live music.  There will likely be food on the walls, children being loud, dogs barking at everything that walks by the window, cats knocking things off counters.  But there will also be stolen kisses and Valentine's Day flowers and footsies under the dinner table and an early bedtime for the youngsters so us old folks can have some adult time. 

This year is certainly a far cry from last year.  But honestly?  I think its way better.

 

 

The snow fell and I right along with it

Finally, it came.  Boy, howdy, did it come.  We got a good six inches between Tuesday night and Wednesday morning.  School was delayed, meetings were cancelled, we pretty much didn't leave the house except for putting the kids on the bus and getting them back off. 

The kids had a blast playing in the snow.  All Wednesday it was the perfect snowball snow - fluffy, just wet enough to stick together to form a ball.  Race Car man quickly got over his aversion to socks when he discovered how cold his feet got in his snow boots without them. 

We found out Wednesday night that school was cancelled for Thursday and the kids were beside themselves with the excitement of playing outside all day long.

We woke yesterday to a light freezing rain that continued all day long.  It left a two-inch layer of ice crystals on top of our snow and coated every tree, fence, mailbox and vehicle in a sheet of ice. 

I did leave the house, though.  Had to.  We we were out of dog food and milk, two things that in this household are required to keep the earth revolving around the sun.  And then, I had the followup appointment for Race Car Man's evaluation.  He had to retake one test series, and then we met with the psychologist.

I answered a lot of questions.  My son answered some questions.  The doctor was kind, measured, and very patient.  As he interviewed me, he completed an evaluation.  We clarified some questions.    He will compile his report and send it to us, probably in a week.  But of course, as a parent, you want to know the answers to your questions, even if you think you know what they are. And so I asked him.  And he very kindly and gently shared the results of the evalution form he had just completed with me.

I've had to learn some new phrases about myself over the last couple of months - some easier, some harder.  I've had to learn how to say "I am a wife" after a few years of wanting to be anything but. 

I had to learn how to say "My brother is dead" and saying it still causes a surge of anxiety and pain that feels like its going to break my sternum in half.

And as of yesterday, I have one more to add.

"My son has autism."

 

 

 

 

Seeing beyond the label

Tomorrow the race car man has a very long evaluation to do. 

When his teacher wrote us to say that he was not showing any behavioral advances in school and that she felt something was missing from his diagnostic picture and definitely his medication toolbox, I stopped procrastinating and got on the phone with the insurance company.

The child psychiatrist who also manages Amazon Girl’s medication spent a half day with us, and we walked away from that appointment with a prescription for an anti-anxiety medication.  In just days we saw major improvements both in his ability to be more compliant at school and in the frequency and severity of his sensory meltdowns.   

This second evaluation will give me a much clearer picture of where we will need to approach behavioral therapy from.

I tell my kids frequently that I’m the luckiest mom in the world, and I believe that with all my heart.  There are times that their behaviors are irritating, when its easy to lose sight of the essential truth, that they are each unique and perfect in their own way.   While I like to think they embody the best traits of both their father and I, its probably more accurate to say that in two separate instances, our mutual DNA combined to bring something entirely new and special to life. 

Its easy when you have lots of doctors and diagnoses to get lost in the land of labels.  We need to have names and labels for our disorders, for our behaviors, yes.  But my child is much more than his labels.  His labels do not define for you at all the nature of who he is and what gifts he possesses within him.  My daughter’s labels do not come close to describing her enormous love for others, her creativity, her joy. 

Too many people look just at the labels.  Or they look at the behaviors the labels describe, and they make judgements without expanding their knowledge of the actual person wearing the label.    There was a strong reaction in the special needs community recently to some  negative reviews of the film Extremely Loud and Incredibly Close, a story about a nine-year old boy whose father perishes in the 9/11 collapse of the World Trade Center.  Although the book on which the film is based and the film itself never specifically say so, the character displays many behavioral traits that indicate a spectrum disorder – odd speech patterns and tone, difficulty with social interactions, extreme sensory reactions. 

The review that received the most negative response was from David Germain, movie writer for the Associated Press.  His review appeared December 19 at SFGate.com, the online home of the San Francisco Chronicle.  You can read the full article here, but the salient points are the following direct quotes:

”Newcomer Thomas Horn…is a mixed bag, holding his own among the adult actors, but, through no fault of his own, forced to behave with excessive shrillness much of the time.

That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive).  You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating.”

And those are the kind of people I dread my kids encountering.  The people who can handle special needs for a few minutes, but lack the compassion or the inclination to “see through” behaviors to the kid inside.  The kind of people who can’t spare five minutes to try and comprehend that a person is more than the rhythm of speech they employ or the pitch and tone of their voice.  

How much of a self-absorbed narcissist do you have to be to find the struggle of a child who has just lost his parent irritating because he doesn’t happen to sound right when he’s speaking?  How little humanity do you have to have left in you to NOT find this kind of story compelling?

Does it take some patience to look past my children’s behaviors?  Often, yes.  But you know what?  It takes patience to be a human being.  Whether you are dealing with people who are differently abled, who have mental health or neurological disorders, who are ill with a terminal or debilitating disease, you ought to be able to have a little patience.  You have to have a little patience to drive through a toll booth or wait in a line at the grocery store.  You need a little patience to cope with an aging parent who isn’t at his best now, but who is still a person you love deeply.  You need patience to try and go anywhere with an absent-minded spouse who can’t find her keys, her coffee cup, her cell phone.  You need patience to make it through a work day with people who are crabby or uncooperative, who didn’t do the things that you asked them to or who made a mistake that cost you time and money.

So even if we end up with another label tomorrow, it won’t change who my son is.  It won’t change the love and respect I have for him.  It won’t change anything but the ways in which we try to help him succeed.  Lets have a little patience for my boy.  Let’s look past his labels to his bright mind and unquenchable spirit.  Lets do that for every child, neurotypical or not, able-bodied or not.  Do it for me.  Do it for you.  For all of us, lest we lose our humanity.

Making a list and checking it twice

I slogged through work Thursday and Friday with this nasty cold that's going around thinking that the weekend would magically make it go away, except that it didn't, and so I stayed home yesterday and I did my very best imitation of a log.  I didn't do anything.  Almost anything.  Well, okay, maybe I ran the dishwasher.  And fed my animals and my kids, because letting them starve would be very wrong.  And I drove my kids to school and I picked them up from school and I wrapped presents that the kids picked out for their dad's birthday.  And other than that, I made like a very quiet, very motionless log.

I don't sound much better today, but I feel lots better.  And lots better is still marginal, but it beats hell out of how I felt all weekend and yesterday.  Onward and upward!

My husband got laid off this weekend.  Its a long story having to do with industry stuff and basically a whole bunch of guys on this job had to be laid off for technical & budget reasons outside of their control.  We don't know what it means yet in terms of whether he'll go to a different plant between now and March.  There are some other possible options for contracts - some now, some next month, some in February.  He found out today that the soonest possible option won't be until January, so guess what?  HE'S COMING HOME!  I'm probably a lot more excited about it than he is, but he's making tracks west tomorrow, and that's more than enough of a Christmas present in my stocking than I could have dreamed of.

I'm trying to schedule more evaluations for the little guy.  We have one kind of evaluation set up for next week, and I'm trying to work with my insurance company and an out-of-network provider for some other testing.  Unless my insurer can work something out with the doctor, I'm going to have to find $1300 lying around in a drawer somewhere so I can make sure we've covered all bases.  Does anyone have any good connections with the Money Fairy?  Just keep all things crossed.  This doctor does not like to do single-case agreements with the insurers and so typically he would require payment from me and let me wrangle out the final settlement with my insurance.  That's not quite workable for me, so we need some stars and planets to align in our favor.

Now that Christmas is drawing near, we sing "Santa Claus is Coming to Town" pretty much all the time.   The little guy was acting up in the car the other day and I said to him, "Shhhhh....Santa's watching. "  He turned to me, wide-eyed and concerned.  "But HOW does Santa know what I'm doing?"  Santa's a stalker, buddy.  I didn't even have to try and answer, Amazon Girl took over.  "I think Santa's just like God.  Except smaller than God.  Just like God is all around us, Santa's kind of like that too.  He's like God's little brother."  She's almost at that age where she should stop believing in Santa.  Every few days she comes home from school bent out of shape because some kids just won't stop talking about how they don't believe in Santa Claus anymore.  I sense that she thinks they're probably right, but that she's not ready yet to give up the fairy tale.  Fine with me - I want her to be a little girl for as long as she can.  The teenage years will be here soon enough, and then she'll know everything and I'll know nothing and my makeup bag will be fair game.  Stay little, baby.

 Tomorrow is Pearl Harbor day.  My Grandpa Smith was a WWII vet.  He retired from the Coast Guard as a Lieutenant Commander, and he was stationed at Annette Island in Ketchikan, AK.  My mother recalls being evacuated from their home in the dead of night to a ship out in the harbor.  I can imagine that to a little girl it was probably pretty exciting, but maybe not so much for my Grandma.  I visited the Pearl Harbor memorial when I was a senior in high school and my mom took me on a trip to Hawaii.  I watched the bubbles of fuel and oil from the sunken ships breaking the surface, and it sobered me to realize that the harbor floor was littered with the skeletons of ships and men, this same harbor where tourists were flocking and enjoying the sunshine and the warm hospitality of the Hawaiian people.  Every year I add "World Peace" to my Christmas list, and every year Santa fails to come through.  Maybe I just wasn't good enough this year.  Next year I'll try harder.

Dang, its loud in here

For most of the weekend it was very quiet around here.  I did the kind of things I might do if I didn't have children - I grocery shopped and didn't have to stop any fights or remind anyone a thousand times a thousand times a thousand times that I was not buying them a toy.  I went to church and didn't have to go running to the back even once because I heard screaming.  I had dinner with my parents and was able to hold an entire conversation with my parents without interruption.  I watched a movie and drank a glass of wine with my swollen ankle up on a pillow.  I made breakfast for one.

It was so peaceful, and yet...

I picked them up from their dad and they weren't here thirty seconds when I breathed a sigh of relief.  The missing piece.  NOISE.

Photo credit:  Michael Barnes 2011

Their lack of ability to modulate is both maddening and delightful.  Whatever they are feeling, they feel it at full throttle.  Sometimes its hard to distinguish playing from oh-dear-god-someone's-bleeding-to-death-in-there.  When they're happy, they scream.  When they're angry, they scream.  Sometimes my son will spontaneously start screeching at the top of his lungs while he plays with his cars - and its a toss up whether he's suddenly decided his jeans are going sideways oh mah gah sensory issues!  or he's pretending the steam engine is blowing its whistle at the station. 

Photo credit:  Michael Barnes, 2011

I worry sometimes that I've become a little too accustomed to the melodrama playing out around me.  I don't routinely get up to check and see if someone's accidentally sliced a hand off anymore.  I don't automatically stop them from swinging at each other.  I don't assume the worst when I hear them scream.  I just think to myself, "Dang, that's loud."  And I go about my business until or unless it becomes apparent that the noise stems from something requiring intervention.

Right now they are throwing paper airplanes in the air and then throwing themselves onto the couch with a loud "heeeeeeyaaaaah!"  followed by the loud thump of a small body on brown leather.  I just shake my head and smile. 

Solitary dinner and a quiet glass of wine is nice, sure, but this?  This is living.

Earplugs. Or something.

Honestly, I don't know why we don't see more stories in the newspaper about parents with oppositional children driving their cars straight into brick walls or off of the sides of overpasses.   And I confess to having a burning curiosity as to how so many oppositional children manage to survive to adulthood.  And even as I write this I have to kind of laugh, because after this long, my coping skills have developed to levels I never imagined were possible.

My son, God bless him, is simultaneously one of the most charming and one of the most maddening people I know.  He has been at his new school for just over a month now.  He knows the name of everyone in the school.  I pick him up and no matter which crossing guard is waving us across the pavement to safety, he knows her name.  He smiles at her, waves at her, enthusiastically shouting, "Hi Mrs. So-and-So!"  And they all smile right back at him.  "Hi Mr. Race Car Man!"  They love him.  And he IS lovable.  So charming.  About two days after his birthday party he came up to me in the kitchen and wrapped his arms around me. 

 "Mommy, when is your birthday?" 

"Just after Christmas.  Why?"

"Because you made such a special birthday for me. I want to make you the bestest car in the world for your birthday."

Melting.  I'm melting.  He is so adorable when he does this.

He remembers people's names, he remembers the smallest details about everything.  His brain is fascinating to me, and I know I've only scratched the surface of what he's capable of understanding and doing.  As a kindergartner, he rarely participated in learning activities in his classroom.  He was mostly curled up in a ball on the floor, not coping.  Yet he passed the end of year testing with perfect scores.  Of course, they only test them to their grade level, so that's not so amazing.  What was amazing was that his aftercare provider, on days when he'd been naughty, made him sit in her office and do math and reading books during recess.  "Just for fun" (or so she says), she gave him the first and second grade math tests.  He scored perfectly on first grade math and about 80% on second grade math.  As a kindergartner with little to no math instruction whatsoever.   I tell people that this is the child who will eventually be building nuclear bombs in the basement if his abilities are not channeled very carefully.   SG wanted to get him a chemistry set for his birthday.  My response was "Please, no, I like my house without the burn marks on the walls and carpet."

 And then there are the days (or the segments of a day) when things just get borked. 

Now that my daughter is doing "real" homework, I've become weary of being her walking thesaurus.  We went to the bookstore yesterday afternoon and she is now the proud owner of a thesaurus, a dictionary, and a children's encyclopedia.  I showed her how to look up words in the index of the thesaurus to find what pages to look on, and she was off and running.  But bookstores - places I used to love, places I used to be able to hang out in for hours - are my nemesis anymore.  If only they would just carry BOOKS.  But no, they've got toys now, almost as many toys as they have books, it seems.  Brilliant marketing tool, people.  Oh, and BITE ME.   While I searched for materials for his sister, the little man played at the train table in the kids section and then with the muppet puppets in the puppet theatre (it sells for just $89.99, folks, and if you buy it they throw in a free puppet.  Neato Frito. )  But when it was time to check out, he was standing there holding a box of train pieces. 

"Mommy, can I have this?"

"Not today buddy.  We're not here to pick out toys."

And let the screaming begin.

Would it hurt to buy my kids a toy sometimes?  Maybe not.  But unfortunately we did that a few years ago and somehow it took hold in their minds that they should get a new toy everytime they go to the store.

"But I was GOOD!"  he shouts at me.

"Yes, you were good.  That doesn't mean I'm buying you a toy."

I finish paying, I ask the kids to get in the car.

"NO!!!! I want this train!!!"

I'm not going to let him stand there disrupting anyone else's day one second longer than I have to.

"OK, here's the deal.  You have to three to put the box down and walk to the car.  If you don't, if I have to take the box from you and carry you to the car, you will lose the chance to watch television after homework.  No Mighty Machines."

"NO!!!!!"  he screams.

I count.  He does not comply. 

I very calmly take the box from him, calmly pick up his taut, struggling body, and carry him to the car, put him in his booster, buckle him in.  He is screaming at the top of his lungs.

I get in the car, put on my seatbelt, turn on the CD player.  "Daydreamer" by Adele.  Though I can barely hear the song through his shrieking, I focus very intently on the words so that I will think about something other than his piercing yells.

He kicks my seat and screams almost all the way home.  I manage not to drive off the overpass, slam into a concrete divider or drive us off a cliff.  I manage not to scream back at him.  But finally I cannot take anymore of the screaming.  I don't want to engage and I don't want to be upset, I am working so very hard at maintaining my composure.

"Buddy, you need to stop the screaming.  If you can't stop screaming you're going to have to stay in your room when we get home."

He yells at me for a few minutes more, but then finally his shrieks turn to quiet sobs.  Eventually he stops.  He picks up the encyclopedia I bought for his sister and starts to read it.

Some might classify this as a colossal failure.  I think it was a screaming success. 

Sorry for the pun.  I couldn't help myself.

My son lost his cool, but I didn't lose mine.  Where in the past he might have screamed for an hour or longer, he screamed for about twenty minutes.  See, in special-needs-land, we measure success incrementally. 

Even so, there are still times when driving off the overpass seems like a reasonable alternative.

 

A light so bright it hurts my eyes

In the noise and chaos of dealing with too many balls in the air, I'm not overburdened with opportunities to think.  Between the kids, work and animals, usually any chance that I might slow down and string two coherent thoughts together about how I feel and where am I going in life are interrupted because a ball or two is about to go SPLAT!  Quick, catch the ball!  What was I thinking about?  I forgot. 

Suddenly Sunday night arrives and the kids are off to their dad's.  I'll see them after school four out of the next five days, which helps, but its evening, and then its morning, and holy crap, its dark out.  Fall arrived and I was so busy avoiding thinking about it that it I almost didn't notice it happening.  Lets just say now would not be a good time to run out of Wellbutrin. 

I have reason to believe that this winter will be better than last winter, which was better than the winter before.  That two-year-old winter, just post-separation, was fucking brutal.  The kids were fighting our family's circumstances with every fiber of their beings, I was facing nights where my kids were not with me and I had not yet done the work I needed to do to accept that pain as a part of my life.  It was dark, I was alone, and even though I was finally free of living within an angry and shattered marriage, I was not used to being alone.  I made it through, by the skin of my teeth it seemed sometimes, and by the time the next winter came around, I was doing better.  I was making progess in my personal psychological and spiritual practice.  I was finally comfortable with being alone, with periods of quiet contemplation.  I had things to do and friends to enjoy when I needed some time around other people.  I met SG, and for the most part, the rest of the winter seemed effortless.  I was happy, mostly.  The depression was there, of course, it always is, but it crouched inside its little mouse-hole, barely poking its nose out to sniff the air.  Occasionally it would skitter across the floor, only to be vaporized into black smoke by the shining bright light of my happiness.

This year things are somewhat different.  I'm with someone, and yet I'm alone.  It's hard, its a struggle, and let me tell you that every minor relationship issue feels greatly exacerbated when you can't see the other person's face when you're hashing things out.  So its both OK and not OK at the same time - and right there I am reminded of the twofold nature that I try so hard to embrace.  Life includes both joy and pain, and so this is just a natural part of being human. 

The other thing that changed is that my ex and I changed our parenting schedule.  We went to every other week, a situation I wasn't entirely happy with but agreed to because it was pitched so reasonably.  I have a friend that's a judge.  He says most parenting plans are like this and they don't like complicated parenting plans when you go to court.  And really, it makes more sense to limit that number of transitions they have to deal with, especially with our mixed bag of mental health issues.  It took a while, though, before I realized the real reason for it.  (When I figured out that our parenting schedule matches his girlfriend's parenting schedule and they are both surprise! kid-free on the same weeks, I had to draw a little +1 in his column in the imaginary scorecard I keep in my head.  Touche.  Nicely played.  Asshole.)  So before, the last the longest my kids slept somewhere other than my house was two nights in a row.  Its not all that bad, considering.  On the weeks they are with their dad I still pick them up after school until he gets off work.  I still get to be involved in dinner and homework and all the chaos and noise four evenings on the off week.  It helps tremendously.

Sunday afternoons are special.  I savor those last few hours with them, even if we're doing mundane things.  Yesterday we went up to Michelle's and spent horse time.  The drive is a little over a half hour. 

As we drove home, the light was beginning to thin.  My daughter laid her head on my shoulder, and grabbed my free arm to wrap it around my shoulders.  I hugged her, ruffled her hair, touched her soft cheek with my fingers. 

There are moments in time when loving my kids is both the sweetest and most painful thing imaginable.  I am awestruck once again by how incredibly fortunate I am to have these mysterious and quicksilver beings in my life.  I love them completely and without limit, and I know that our time is precious because it will too soon be less available.  They are with me for but a brief span of their lives, and they will drift further and further away from me as they learn how to be independent people.  They will still be mine, in my heart of hearts, but more than that, they are their own.  So I hold my daughter's hand in the car for as long as she will let me, squeezing it gently, savoring the sensation of her fingers entwined and our palms - hers soft and warm, mine calloused and hard - pressing together.

These are the moments I pull from my memory banks to hang on to when the night is dark.  They are the bright light that chases away the shadow. 

This winter will be better.

Alpha Female

Having big dogs definitely comes with challenges.

They eat more.  They knock things over.  Medications and surgeries cost more.  They have more hair to shed all over your house and your clothes.  They can reach food on the counter far too easily.

However, there are a lot of things I really like about having big dogs.  They can be intimidating to strangers.  No one in their right mind is going to enter my home uninvited.  They are substantial enough that when I'm lonely and I really need someone to hug, they will suffice quite adequately if no human is available. 

And lets get right to it:  There is something empowering about looking your 95-pound Rottie mix in the eye and saying in a slightly sinister tone, "Down."  And watching him hit the floor in abject submission to your authority.

*****

Today my daughter is officially transferred to C's school. 

Logistically, having kids in two different schools that begin and end at the same time, is a nightmare.  You are practically forced into a situation where you must pay aftercare costs for at least one of them on the days that you are actually available to pick them up from school.  And if you get delayed picking one of them up because of traffic, there is nothing that compensates for the trauma of a child who thinks they've been forgotten.

Add to that the extra half hour morning and evening that stopping at two different before/aftercare centers adds to my commute thereby turning what should be two hours into the car into three...its just not that workable.  Its not that it can't be done -- its that I don't want to do it.

I went to C's school last Monday to see about requesting the transfer.  I had taken vacation days and was doing yard/house stuff, so of course I was dressed casually.  Capri's, an old t-shirt, flip-flops.  No makeup.  To my credit, I did wear deodorant and I had brushed my teeth.  No, really.  I asked the secretary about the transfer and she said I would need to talk to the principal.

The principal at our old school was so approachable, so friendly.  She was also efficient and clearly in charge, but she would smile and ask how you were, inquire about how things were in a sincere way.  I always felt she was really invested in the success of all of the students at the school. 

Hence my shattered expectations.

I sat and waited, because I didn't have an appointment and because it being the second week of school, things are naturally busy.  I didn't mind waiting. 

She swept out of her office in her three-inch high heels, her expensive and form-fitted dress, her clearly gym-sculpted figure, her dark tank, immaculate nails, perfect makeup and sculpted hairdo.  The secretary pointed her out to me, she made eye contact with me - and did not smile.  She indicated the paperwork that I would need to fill out and advised me she was not making any decisions on transfer for several days as she needed to see how many new students she had and how much room there were in classes.  Her tone of voice clearly implied "I don't wish to tell you yes.  I am the Person In Charge here, understand?"  OK, fine.  I smiled at her in a friendly way:  nothing.

Over the course of the week there was a little back and forth - special services wouldn't recommend that A ride C's bus, and of course with his aftercare outside of the boundaries for both schools, it wouldn't be workable for the transfer, so the transfer was initially denied. 

Never understimate the willpower of a special needs mom.

After a morning well-spent on the phone with both the special needs director and the transportation office, the transportation director agreed that A could ride the bus with her brother.  Keep in mind, we're not displacing anyone.  There are four or five children on this bus, and its a full-size bus.  We're not adding any extra stop- or drop-offs.  Logistically, its pretty much a wash. 

So after I talk with the transportation group, I get a call from the principal.

"I understand you've spoken with the transportation department."

"That's correct."

Coolly I am informed that based on their agreement to transport her, my daughter can transfer to my son's school and start the following Monday - today.  Awesome! 

"Thank you so much, I really appreciate your help."

What do people normally say when thanked?  What, it's not, "I must advise you that if the special services bus were to become full then your daughter would be unable to ride it and would need to transfer back to _______ .  Do you understand this?"   Whatever happened to saying "You're welcome?"

Dang.   Its easy to recognize an alpha female, but rarely have I met any human being, alpha or not, that I couldn't establish a rapport with.  Clearly my skills need honing.

Now I know all the special needs moms - and probably most of the moms of school aged kids - understand that your school staff are your most important and valuable allies when it comes to getting needs met and things done.  I couldn't have survived the last few years without the help of the secretaries and the school nurse and our wonderful, lovely teachers - and of course, our principal.

All I need to do is to get her to crack a smile.  Just one genuine smile. 

I have my work cut out for me.