Barnmaven

Two steps from success, two from disaster

Life is such a balancing act.

There are periods of time where I am calm, unperturbed, I have everything together.   There are other times when I feel like everything is falling apart and I'm just screwing it all up.  I would be lying if said that I was always more together than not, or that sometimes these barometric changes never occured once or twice within the same day. 

When SG was gone, there were times I really struggled to hold it together.  His prolonged absence and his occasional disgruntled reaction to my letting him know how hard a time I was having triggered my lingering abandonment issues.  I'd have days where I felt like nothing was ever going to be OK again, even when I know better than to think that way.

Now he's home, he's been home for more than a month.  I fall into the trap of being so completely content that I start telling myself that everything will always be this way, always be OK.  And that's a trap I don't need to fall into. 

I suppose there is tipping point between the dramatic rise and fall where I am grateful for all that is going well, I am coping moderately fine with the things that are difficult, and I know and accept that things could be a whole lot better or a whole lot worse, and probably will be some of both before my turn on the carousel pony is over.  I know there are a lot of things I'm able to cope with better than I used to.  There are a lot of things I've given up trying to control and other things I'm still working on letting go of.  There are also, truthfully, many things I know that could stand to be improved.  Some things I'll very likely gain ground on and there others I quite possibly never will address.

I'm challenged at home and at work right now.  Not with the husband, thankfully.  SG is relatively unperturbable, he is fun to hang around with and the needle is staying fairly reliably in the "awesome" segment of the dial.  Thank God for that. 

I've been very fortunate, particularly in the last few years, to report up a chain of command of people I respect and who have been more than willing to mentor me.   Like a lot of people, I've worked for a wide range of managers, some great, some horrid.  I really appreciate a manager who doesn't beat around the bush, who lets you know what you did wrong and then doesn't remind you about it forever, who lets you know when you've done well, and who gives you good advice with the sincere intention of helping you to be successful in your environment.  I have rarely worked in a place where I had the level of trust in my manager and my manager's manager that I do currently.  I'm pretty damn grateful for my job and my company.  It helps that I really love what I do.  I have mentors and I have some great role models.

But like every work environment, things can change.  No, let me rephrase that:  things WILL change.  No company or culture or group or individual can stay the same forever.  As we move forward with some big projects looking to grow our business, I know my little corner of the world will change.  I need to seek the opportunities that change provides, accept that change will come, and find ways to support my people in ways that help them succeed in an environment that requires flexibility and ingenuity.  We need to continually find ways to do things better, and sometimes that means blowing it up and turning it into something completely new.  I don't think I can be a good manager if I don't find ways to keep the moments of "OHMAHGAH I'M SO STRESSED OUT TODAY" from taking over my frontal lobe.  You can't have much order and serenity inside your organization if your leadership is falling apart.

It feels like a big responsibility.

On the home front, I've made a friend recently who is a wonderful, if somewhat exhausting person.  She's boarding her horse with me, and because of her circumstances, we are bartering some property improvements and chores for the feeding and provisioning for her lovely little horse. 

Did I mention that my ex and I rarely had people over?

Well, we pretty much didn't.  Like EVER.  And of course I've mentioned that since we split up I opened my doors a little more often, but to those of you who truly enjoy entertaining I probably still look like a complete hermit.  Then I met SG, and we've had friends and family over more often than I've been used to, but I like it. And it wasn't overwhelming, but it also wasn't every day.  Now I've got someone who is coming by almost every day and interacting with us, and I'm not saying its bad, because its not -- its just a big change for someone who is used to being able to walk around half undressed most of the time.  And there are many positives -- my daughter is getting riding lessons from someone who is much more patient with her than I.  Things I need to get to and don't ever have the time to do are starting to get done.  My old horse is getting some exercise.   I've made a new friend who is kind and funny and unique.

I can wish for my little pond to always look the same, every day, but the wise little voice inside me says that stagnant water pretty quickly fills up with green slimy things.  You need a system of flush and intake to keep the water clear and potable.  So it is with my house and my life.  Change is inevitable, and change is not necessarily bad. 

Still, about once a day, I find myself starting to pace and talk to myself.  Less frequently, thankfully, I get the sensation that I'm standing on the edge of a cliff, ready to step off, and I don't know the first thing about how to put on a parachute so I have no idea if I'm going to hit the air floating or go splat!

Inner peace, baby.  I"m working on that.

 

Remembering Fransie

 

Fransie was an artist, a mother, a daughter, a birder.  She had a rich laugh and a devious smile.  She loved unconditionally and she appreciated things about you that you didn't know anyone else noticed.  She could be sweet and innocent and sewing costumes for the high school drama program one minute and flipping you the bird or doing body shots in the corner the next.  She was the ageless paradigm all women contain within them, innocence and knowledge and the power to make men kneel all in one broken vessel.

We worked together, and in the misery that environment created, we bonded.  We bonded over lunches, walks, Sci-Fi Fridays and an uncountable number of glasses of wine.  We bonded over faith and disintegrating marriages.  We needed one another, we helped one another, we carried each other when we felt we could no longer go on.  We looked past the worst in one another and always sought the best.

Her cancer was found in the spring of  '07.  Treatment almost killed her - surgery, radiation, and then chemo to which it wasn't discovered until almost too late that she was allergic.  When she finally recovered, she told me more than once, "I'm never going through that again.  If the cancer comes back I will only request comfort measures."   And when it did, she was true to her word.  It was her right to choose this, I never questioned it.  Suprisingly, the minor chemotherapy and pain control gave her a lot more time than anyone expected.  She and her children left New Jersey behind and moved to Texas to be nearer parents.  I know she relied greatly on - and was deeply grateful for - their love, care and support these last several years.

I was so surprised to get the email from her mother yesterday.  I guess I got used to her ability to exceed our hopes.  Just a few days ago she was still forwarding me emails with funny pictures or meaningful words that touched her.  While I always knew Fransie was fighting a battle she couldn't possibly win, I hoped for a miracle.  We all did. 

Whenever we talked, even though I know she had a lot of pain and that her ability to enjoy the things she loved was becoming more and more limited, she would still laugh and still wanted to know how I was doing.   The last time we talked, a few weeks ago, I had no idea how near the end she was.  She sounded then as she had many times over the last few years.   She was tired, but she still had that unique quality in her voice - a little sad, a little funny, a little wry.  We talked then, as we often did, of her faith and her firm belief about what happens to us after we die.  Even when she got mad at God, even when she couldn't understand why she had to go through all of this, she believed.  "I know that my treasure is in heaven," she would often say.  

And now she is in the arms of the One she trusted to carry her through.

She leaves behind her daughter, her son, her parents, her son-in-law, her friends - all of whom have been deeply touched and blessed by her love, her laughter and her heart. 

Fransie, I know you don't want us to be sad.  I know you want us to remember you in the things that you loved - in the wildlife you captured so beautifully in your art, in the birds you loved to watch and name, in the wooded paths and in the shallow ocean pools teeming with life.  And so I will. 

 

BlogHer Book Club: I am not an artist!

DISCLOSURE:     I am being compensated for this BlogHer Book Club review; nevertheless, the opinions contained herein are truly my own. 

I don't look for sponsored content for this blog.  I'm not good at reviewing things and I'm not good at writing things on a schedule.  Plus, that's not what this space is about.  I don't blog for a living.  I work for a living; writing is something I fit in when I have time to sit down and allow the random thoughts in my head opportunity to morph into words on a screen.  Book reviews are an exception, simply because I'm so passionate about reading.  The concept of I get to read a book and talk about it for a small reviewer fee -- what's not to like? 

This program is a little different; instead of reading a book and sharing my thoughts with you, the BlogHer reviewers were asked to test out a new online service designed by author Julia Cameron.

The Artist's Toolkit is an innovative and interactive program designed to stimulate creativity and to provide structure and discipline to the creative process.  I've already told you my writing process.  Something has to come to my mind first, then I can write.  If I try to force the process its like turning squirrels loose in a nut factory.  There's either nothing there, or the resulting mess is not worth clicking on the 'publish' button.   I was eager to see if The Artist's Way Toolkit would give me the structure I felt was missing.

At first glance, the toolkit is inviting and encouraging.  The site design is clean and elegant.  Cameron has weekly Artist's Exercises and Artist Dates designed to move you out of your routine and into the act of living outside of your box.  The exercises ask you to consider questions pertaining to yourself, your beliefs, the ways you are encouraged or discouraged by self and others, and requests you to write your responses.  An online journal is provided for each week's activity.  There are thoughtful daily affirmations, and the exercises are refreshing. 

Thoroughly daunting, though, is the contract with yourself you are asked to sign, committing to writing three pages (longhand) each morning - the 'Morning Pages.' 

Every exercise you take on to improve yourself is good, but not every exercise is going to work for everyone.  If I were committed to becoming a for real writer, if I didn't have special needs children and a full time job and a one hour each way commute to work everyday, if I didn't have a husband and a horse and so many other beautiful things in my life that I'm already committed to, this would be an enriching program. 

When we decide to do or become something in life, we have to make a level of commitment to do or to become in order to facilitate the process.  The Artist's Way Toolkit combines a fine structure with Julia Cameron's provocative exercises to create a helpful pathway for the committed writer, painter, sculptor or composer. 

If your passion for art is something that you can commit the time to growing and nurturing, The Artist's Way Toolkit is a service with your time to consider.  If you can't commit to a daily investment, but still have several hours a week to devote to the practice, Cameron's toolkit will foster your creative abilities.  

If you're more like me in terms of your ability to invest, you'll either need to be satisfied with the current status  quo or be willing to make significant changes to your life in order to get everything you can from Cameron's wisdom and insight.

I guess I'm not really ready to be a writer.

 

You can read other reviews and participate in discussions about The Artist's Way toolkit here:

http://www.blogher.com/bookclub/now-reviewing-my-artists-way-toolkit

 

 

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.

 

 

 

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.

Lessons Learned Chapter 28

Just because your husband leaves you a voicemail that says he's heading home shortly and by your most generous calculations he will be home by dinner doesn't mean he actually will be. 

If no one else will eat the tomato pie, you probably shouldn't either.  You might end having it come out of you in the form of hot lava for the better part of the following morning.

Just because you've had the same crappy Blackberry with the cracked clitoris (isn't that what those buttons are, really?) for three years don't assume you're going to be on the replacement schedule sooner than the guy who's only had his for a year plus two months. You haven't been cultivating the IT department like you should.

Don't wait until the betta fish starts swimming sideways to clean the tank.  It is much less traumatic to keep the current fish alive than to live through the waterworks and wailing when you have to replace her.  Apparently it is possible to LOVE a fish.

Even though your enormous rottie mix is completely gentle when playing with your Chihuahua does not mean he will extend the same courtesy to your cat.  Or your chickens.

Never ask your kids what they want for dinner.  Tell them what they're having and then become selectively deaf.  Its louder but it saves you an hour when you don't have to cook three separate meals.

If your dog asks you to go outside at three o'clock in the morning, let him.  Opening the door to let him out and then back in again takes less time than cleaning up the massive pile of vomit he'll leave next to your new pair of shoes.

Your husband has learned nothing from the last thirty times he left the water on and flooded the dry pen. 

You - and your horse - are capable of so much more than you know.  If you're willing to give the relationship time and trust the guidance of a good trainer, you'll find out just what.

Flooded pasture aside, you know the relationship is forever when you'll let your husband have a look at the ingrown hair...well...THERE.  And he actually will without complaining.

Go ahead and drink the really expensive bottle of wine for no particular reason at all.  It will taste better and be more memorable than you think.

Life can be really awesome.  If you let it.