Barnmaven

On Guilt

My post from last night got me thinking.

I don't know about other moms, but I suspect its the same thing.  Whenever I hear a new theory about the causes of autism, I feel defensive. 

I mean, if vaccines DID cause autism, then I, the parent who made the choice to vaccinate my child, am part of the reason my son has autism.  Or if its the things in my house that made him sick, I bought those things.  I exposed him.

Even if its simple genetics -- those are my bad genes he got.  Well, mine and his dad's, anyway.  Which all leads me to consider inherent Mommy Guilt and to ask myself what good does it actually do?

If one stops to consider that even the best lives have times of pain, sickness, heartbreak and struggle, then it stands to reason that the simple act of bringing a baby into this world is automatically going to cause your child to suffer.  And as your child grows and you have to make decisions about where you live and where they learn and who you interact with and what they wear and what faith you follow (or don't) -- all of these things lead to other things which at some point in time will cause your child pain.   Just choosing to take a certain route to the grocery store might be the one thing that caused you to be in a car accident in which your child was injured.

In this life, it is a certainty that we will all suffer, we will all struggle and we will all ultimately die.  Why then, do we have children?  If we only consign them to certain pain, what's the point?  (Rhetorical question, by the bye.)

Does parental guilt serve a purpose?  Why does it exist otherwise?  (Not a rhetorical question.) 

It stands to reason that the concept of parental guilt is not a new one.  Surely when Cain slew Abel, Adam and Eve must have had more than a few terrible nights wondering where they went wrong.  The instinct to protect our children is incredibly powerful and nearly universal.  We've all heard the stories of adrenaline-fueled parents lifting cars off of their toddlers, of parents hurling themselves in front of buses to push their child out of the way, of parents braving flames in order to free a trapped baby.  The need to protect is instinct, there is no decision process involved.   It would naturally follow, then, that when our child suffers, we feel somehow responsible for not having prevented it.

A little guilt goes a long way.  The parent who feels guilty about working long hours may be prompted to make more of an effort when they are home to spend quality time with their family.  Guilt causes us to try to make the best parenting decisions we can, to learn from our mistakes and to continually improve.  When we want our children to be happy and healthy our parental conscience drives us to be and do better. 

But I think guilt can also go too far.  The parent whose child is sick or has a pervasive disorder - what good does guilt do for that parent?   The parents whose children got sick and died in Holbrook, MA from playing in toxic fields behind the chemical plant, what good does guilt serve them?  They couldn't have known.  The truth is that there are things in life we are never going to be able to prevent.  There are pains and truths everyone must learn as they grow.  They are part of the maturation process, they are the stressors that build our character, our resolve and our resilience.  If we never had our hearts broken, how would we learn to make better relationship choices? 

Life to me often seems like a continual progression from one hot stove to the next.  As I blow on my singed fingers from the last character-building experience, I often wonder from whence the next lesson I learn will come.  And so it is, so it will be, for my children. 

I think its possible to be happy without having to experience pain, but I also think that I'm more grateful for being happy when I can contrast it to the times I have suffered.  The joy of being in love is clarified by the experience of losing a relationship.  The enjoyable and relaxed trail ride is even more satisfying in contrast to the memory of the ride where my horse and I parted company - painfully. 

Still, I find as a parent, that I have yet to learn when it is OK to ratchet back on that guilty defensive posture.  I suppose its natural to react strongly to a perceived sense of being blamed when in fact there have been many times since my childrens' various diagnoses that I have very much felt entirely responsible for every single one of those issues.  Rightly or wrongly, that self-searching is a process I think we all go through when our child experiences something greater than a scraped knee or a cold. 

At some point, though, I had to recognize that blaming myself wasn't going to get me anywhere.   in order to be the parent my children need, I have to let go of self-recrimination and be in this moment, making better choices.  Andyou know, even in the worst case scenario where a parent does indeed make the wrong choice about a babysitter or a pet or a medication or any myriad number of things, self-blame is not a constructive thing beyond the initial recognition of "I could have chosen better."  Recognize it and move on, because the next time you will make a better choice. 

So yes, I recognize that I tend to overreact and jump on my soapbox.  Those moments, though, are useful to me, because they help me recognize the areas in my life that could use a little growth. 

 

Miles, time and diesel: Someone made a difference for me.

 

Well, HAY THERE!

(Haha, I crack myself up sometimes).

That's Bumi in the picture.  She's one of the guest horses I've had since March.  She's a real sweetheart and a very lovely horse to ride.  She very cooperatively walked around with her breakfast stuck on her face long enough for me to whip out my phone and capture a photo.

I know I've written about it before, but I am struck constantly by how much I owe where I'm at horse-wise to the loving support of other people.  My horse journey has been influenced so much by my parents and my husband, all of whom have willingly given up whole days to make sure my children were fed and cared for so I could go enjoy time on my horse.  My deepest gratitude is for my friend Michelle, who has unselfishly driven hundreds of extra miles over the last three years to pick up my horse and me for trail rides and clinics.  She's kept horses at her place for me, she's shared her doctoring skills and her advice, and most importantly she has shared her friendship. 

The love of horses, or "the sickness" as some call it, is somewhat indescribable.  When you have it, one of the things you simply need in order to feel truly happy, to be truly yourself,  is a horse in your life.   Its also a real luxury, because horses are expensive to feed and maintain, and if you don't live somewhere you can easily ride at home or have the money to find a good boarding facility nearby or don't have a truck and trailer, you can't really ride your horse much, and that sucks.  My relationship with my horses is as deep and as meaningful as it is with thanks to Michelle's willingness to sacrifice her time and diesel to make sure I got lots of rides in.  I owe most of the miles I put on my horse the last few years directly to her.

This year I was lucky enough to find a truck and trailer I could afford.  They're far from new, the trailer especially, but they have made it far more possible for me to just go and ride when I want to.  Michelle doesn't have to go 30 miles out of her way to collect me when there's a clinic or a trail ride the opposite direction from her place.  I can get my own hay when I need it and not pay extra to have it delivered.   It makes a huge difference for me, and this summer I've gotten to ride even more.

I have a couple of friends who don't yet have a way to haul their horses and pick up their hay.  I sincerely hope this doesn't come off as sounding preachy, but I have it in my mind that I have a responsibility to be a "Michelle" for others, to make it possible for them to enjoy their horses.   They are big shoes to fill, and I'm pretty sure I'm not as generous or gracious as Michelle, but I commit to making the effort.  Its worth it to see more horse people getting to do what they love, and having more friends to go on our trail rides with us. 

My friend Debbie gives riding lessons to kids for prices most trainers wouldn't dream of giving, because her mission is to get as many little girls to fall in love with horses as she can.  She does this not just to create the next generation of riders and keep the sport of riding alive, but because research shows us that by age 10, if a child doesn't have a passionate interest in something, they won't have something to keep them focused and on track during their teenage years.  A sport or hobby can mean the difference between graduating and maybe going to college vs. getting involved in drugs or getting pregnant.   Make riding lessons affordable and therefore putting horses within reach of more families is just her way of paying it forward.  The great feeling of watching little girls beaming with pleasure the first time they are able to canter or go over a jump, that's just the frosting.

I was cleaning stalls a couple of weeks ago and I heard feed sacks rattling.  I figured SG was just out throwing scratch to the chickens and he would eventually come and find me, but after a while I didn't hear anyone.  When I went to put the poop fork away, I found someone had left three bags of horse feed outside my feedroom door.  I had just been thinking that day about what supplies we needed and fretting about a lack of both time and finances.  Someone paid it forward, and it made my day. Hell, probably my month.

There are times we pay it forward and the people we help don't appreciate it or they take advantage of our kindness.  But we don't do this to get something in return from others; the return comes from within, from our own sense of being OK with who we are and what we do.  Intent is important.  I can't set expectations for how others will react or what they will potentially do in return for me, that only muddies the waters of my giving.  I struggle with this sometimes, but I know what's right for me and so I have to continue to strive for healthy thinking.

Sometimes I feel overwhelmed by this world.  Its easy to feel the weight of all the tension and fear from our crumbling economy, our bitter political rivalries, the horror of war and violence.   Focusing my attention on the things I can do rather than the problems I can't solve helps me feel somehow less frightened of the enormous challenges we all deal with.  Doing something positive helps take away the sting when one of my kids is having a tough day or I come home from work feeling defeated.  Maybe we can't change the whole world, but we can sure change something small for someone else today. 

How do you pay it forward?  What ways have other people paid it forward that made a difference for you?  Share your stories!

 

Arms around the whole world

It was a gray, wintery day, the clouds angry and spitting sleet.  The kids and I were headed to the local Target to pick up a few needed items.  As we pulled into the parking lot, I saw her -- a somewhat older woman in jeans and a heavy jacket, gray hair pulled back into a long ponytail.  She was sitting on a pavement bulkhead just at the parking lot entrance, holding up a sign.

Husband sick, can't work.  Lost our home.  Please help if you can.

I winced in empathy, sorry for her situation.  Divorced, feeding a zoo and a household on one income, I understood (and still do) very well how most people are just a paycheck away from disaster.  Before we'd gone ten feet past her, my daughter asked in a very concerned tone, "Mommy, what's wrong with that lady?" 

"I think she's homeless, honey.  She's hoping people can give her some money."

We all got out of the car and headed in to the store.  My daughter pulled on my hand, and I turned to look at her.  Two wet streaks glistened on her cheeks.

"We have to help her, mommy!  Its so cold and she doesn't have anyplace to live!  That's horrible!"

I glanced across the parking lot to the woman, and I thought of my empty wallet and my tight budget.

"Honey, I don't have anything but some spare change in my wallet right now.  When we check out from the store I'll use my card to get a little money back and when we leave you can give it to her, okay?"

"Okay, mommy.  Thank you."

By the time we left the store, however, she was gone.  At my daughter's insistence we drove around and around the various stores on the boulevard, hoping to find her, but we never did.  I realized just that day how deep her compassion and regard for humanity really go.    She has the heart of an angel, longing to heal the world and take away its pain.

The other day I was recalling to SG an account my neighbor related to me.  An old man came up her driveway and wanted to talk about a horse he was boarding (he'd seen the horses in her pasture and decided she might be able to help him).  Suddenly out of nowhere he asked her, "Will you take care of me?"

Obviously taken aback, she said "What?"

"Will you take care of me?"  He was 96, he explained, and he lived by himself.  He didn't have anyone to care for him and would it be alright if she came over to his house every few days just to make sure he hadn't fallen down or died? 

How can you say no to that?  She certainly couldn't. 

About thirty seconds after I finished telling SG about this, I heard sobs coming from the back seat of the truck. 

"Amazon Girl, are you okay?"

"THAT'S SO SAD, MOMMY!" she sobbed.  "That man is all alone!  I feel so bad for him!"  She cried, loudly, for about the next fifteen minutes.  She was completely undone.  I promised her I would touch base with my neighbor and perhaps we could go visit him as well.

I recall a younger me, a young adult who couldn't pass a dog or cat on the side of the road without stopping to collect them, or couldn't stop crying if she saw one that had been killed by a car.  I remember being the person who always gave change to someone begging if I had it to give.

Even though I have grown more cynical in my old age, that younger me is still present.  I don't always stop for strays, which causes my daughter to lose her temper with me, but I try to help when I can.  I am not always the person I want to be, like most people I have times when I feel selfish about giving away what I have. There are times when I have to be realistic about my capability to help every creature - I've had to say "no" to fostering and my husband is trying to convince me to allow our critter count to drop via attrition.     

Her giving nature is something she was born with, but its also something fostered, just as mine was.   My parents were always volunteering their time, to the food bank, to the literacy groups, donating blood. My dad was a volunteer ambulance driver and EMT long after his firefighting days were over.  In his younger years he rarely hesitated to pick up a hitchhiker, even though it kind of drove my mom nuts.

Just as my parents modeled giving for my brother and me, I hope I do an adequate job of model those values for my own children. If I never pass anything else along to them, I can rest easy knowing that at least one of them is growing up to be a person who will do what she can to help others.  I ache a little for the inevitable pain she will suffer when she encounters situations where the help is too little or too late and for the scorn she will likely receive from those who are less compassionate.  I know she will learn, as I have, that its worth it, even when it hurts.  

"I am a little pencil in the hand of a writing God, who is sending love letters to the world."   ~ Mother Teresa

 

Planning ahead

NOW when the number of my years

is all fulfilled, And I

From sedentary life shall rouse me up to die,

Bury me low and let me lie

Under the wide and starry sky.

Joying to live, I joyed to die.

Bury me low and let me lie.

                    ~Robert Louis Stevenson

 

On the days I'm actually in the mood to hear what's going on in the outside world (its an election seasion, mostly I'm not) I tend to listen to NPR's Northwest stations on the way to and from work.  Sometimes I have to throw in a CD or switch to a music station if its early morning and I'm having a hard time waking up or if its the way home and the soothing voice of Robert Seigel starts causing me to nod off at the wheel.  One of my doctors told me once that an attribute of unmedicated ADHD is  tendency to be extremely sleepy in the afternoons.  That was a BINGO! moment for me, as I had been having terrible trouble driving home from work on a daily basis.  Once I started medication it got much better, but I still have days when I'm a little overtired and driving home is a crapshoot.  But I digress.  Again.  I know, you're so surprised!

So a couple of weeks ago Diane Rehms did a segment on aging and preparing for end of life issues.  One of the guests kept talking about a program called Five Wishes.  Its basically a living will but with extras, like telling your survivors what you'd like them to say when people ask how you wanted to be remembered, picking songs or passages you'd like at your services or if you even want services, along with standard advance directives.  In most states, signed by the proper witnesses, it stands as a legal document. 

Its not easy to talk about death and dying, not for most people.  I don't mind it, but my parents have been very open for years about their wishes for end of life issues.  Mom keeps a folder with all the pertinent instructions and information on where all the necessary documents are located.   Other people aren't so comfortable about planning for or talking about what will happen if they get ill or very old or die suddenly.  I suppose most people don't often like to think about the fact that we're going to die someday.  Its the great unknown, isn't it?  It will happen to everyone, but we don't know how or when and we don't know for sure what happens after.  We might believe certain things about what happens when we die, but there's no clear information to be found about exactly how that goes down.  Is there a test?  A door greeter?  Is there really a Rainbow Bridge and will there be a Noah's Ark of all the animals I've ever loved waiting there for me?  Who's scooping all the poop up there in the meantime? 

I do know that I'm not afraid to die, per se, but I'm afraid of dying while my children are still young.  And because my children are still young and because I only recently remarried and I don't have a current will and my advance directive is about twenty years out of date, I really dug into what the folks on the radio were saying.  SG and I talked some about what we would want to happen after Ken died, but we never went ahead and put anything on paper.

When my brother died, it was completely unexpected.  I can't remember ever talking to him about what he wanted done when that time came, it just wasn't something we thought about.  We talked about what we knew our parents wanted, but it never occurred to either of us that we might not outlive our parents.  Because he'd never had those conversations with anyone and because he didn't have any advance directives, his death was exponentially more difficult, especially for my niece and nephews. They are young adults, and my niece was in the position of having to make a lot of decisions without really knowing for certain what her dad would have wanted.  She also had to deal with the pressure of making these decisions with a lot of different people telling her what they thought she ought to do.  Its a position I would never want to be in, and its a position I don't ever want to put anyone else in.

I kind of forgot about the Five Wishes site for several days, but at some point I had a chance to actually use my laptop at home and I checked out the information there.  I was planning to sit down with SG at the next opportunity to talk about the end of life planning and the need for us to outline our wishes and probably get wills made.  And then...

(This is where the hair on my arms starts to tingle a little bit)

...the doorbell rang.  The dogs freaked out, so it took a few seconds to shove them into their crates.  I opened the door and there was a very nice looking older blond lady standing on my stoop, holding a clipboard and carrying a casual looking briefcase.  She introduced herself and as it turns out, she is a sales representative for a local funeral home. 

COINCIDENCE?  Does this stuff ever happen to you?  Isn't it really spooky when it does?

It wasn't really a good time to have her come in and sit down with us (kids rampant, house messy, in the middle of things), but we made an appointment, and she came back a few days later.  We talked for a good hour or so, and she left us with some materials.  One of the materials is a pamphlet we keep even if we decide not to do any pre-planning, where we write down all of our important information, things we or our families would need to know if when we die.

I'm not planning on dying anytime soon, and neither is SG, of course.  Most of us aren't.  But this is a one way trip, boys and girls.  Making plans isn't something we are doing for ourselves.  Its something we are doing for each other and for our children and our families and friends.  When my spirit no longer lives in my body, what happens to my body won't matter to me.  It will matter, though, to the people I love.  And so we plan ahead, hoping that those plans won't be needed for many years to come, but having some peace about knowing that they are made just in case.

(No, SG, I'm NOT having your body shot into space on a rocket.  Stop asking me.)

photo credit:  http://www.flickr.com/photos/justintron/6245250507/

 

Finis.

Your greatest teacher

How is it that so many people make a living convincing us that we're not living the best lives we can possibly live?  We'd be happier/more fulfilled if only we invested our money and time in their sure-fire program to improve our selves/homes/yards/clothes/bodies/faces/attitudes.   And if we question any of the steps of their particular program or mention that our life experience doesn't jive with the brand they're trying to sell us, we either didn't understand the book, there's another set of DVD's we should purchase that addresses that VERY thing, or we're just DOING IT ALL WRONG. 

Hint:  Most people who make a living telling you how to live your life don't make money if you don't buy the line that they know better than you how to become happier - more popular, more successful - more authentic/creative/better-looking/ thinner/ curvier/taller/hairier/less hairy.

I've noticed too that many Important People who make a living selling you their ideas don't like having their ideas questioned or hear about the ways in which your life experience doesn't match up to their "program."  If you got in a car accident and you were depressed, you must have manifested it or you just didn't work the program right.   If you didn't make a fortune after the first three months of following their Internet Miracle Marketing scheme,you just need to invest more time (and money) in their product in order to achieve the promised success. 

Its not that these writers, geniuses or gurus don't have something to offer -- they do.  They all do.  But not a single one of them is the end-all, be-all of life.   No book or DVD or system is going to solve all of your problems or turn you into somebody else.  And you need to know that the people who write these books and sell these programs don't have all the answers.  Maybe they have the answers for themselves and their own successes, but they don't have all the answers for YOU. They each carry with them the assorted baggage of their internal belief systems, their life experiences, their particular biases.  They all prefera certain way of doing things and would like you to believe that they offer you this wisdom only as a way to "help" other people.  That's easy to believe so long as you don't look at the man behind the curtain - or the price tag on the next set of DVD's.

And maybe some of the things they espouse will work for you.  But likely as not there will be parts that aren't a good fit.   That's where you have a choice.  You can accept what works for you and not worry about the rest, you can reject the entire philosophy because it has to be 100% perfect for you to accept it, or you commit to it anyway and try not to worry too hard about pretending to agree with the parts of it you aren't convinced about.

You get to live with whichever choice you make, but please know that you don't have to throw the baby out with the bathwater and you don't have to walk around in clothes that don't fit.

I relate it to the way I go about learning with my horse.  There are a LOT of famous trainers and clinicians out there.  In the same way as some people feel compelled to convert you to their new religion after a deeply moving spiritual experience, people who've had a breakthrough with their horse after learning from a certain trainer want to introduce you to the Next Best Thing to happen to horse people.

Since I'm open to learning new things and new and better ways of getting where I want my horse to  be, I'll glady invest in lessons or a clinic with that trainer, or audit a clinic if its out of my price range for me and my horse to participate.  If I'm open minded enough to try that trainer's suggestions, I might find something that works a lot better for me and my horse.    But if I find that the thing I was already doingt that I learned from someone else works better, I'll keep doing that instead. 

A good trainer won't insist you do things his or her way.  In fact, a really good trainer will watch what his students are doing and be willing to ask about something if they see it and they think its working as well or better than their own techniques. But you don't have to believe any trainer that insists if you're not doing it HIS way you're doing it WRONG.  The proof is in the results you get with your horse, no matter what the trainer says.  You don't have to keep doing something that just doesn't feel right to you. 

You don't have to stay in a relationship that doesn't feel right or where you don't feel safe.  You don't have to stay in a job that doesn't fulfill you. You also don't have to engage in a personal/spiritual/self-help program that's not working for you just because the person who happens to gain from your participation tries to make it sound like you're just not doing it right and you need to try harder.

Just because someone is successful and an "expert" doesn't mean they're going to be any better at living my life than I am.  They just get paid to convince me that they are.    Just because they wear a certain kind of clothing or use a certain kind of household product doesn't mean that my jeans don't fit me just fine or my countertops are any less sanitized.  Just because I don't agree with their dogma doesn't mean my own faith is wrong for me.

Look, I KNOW when I'm doing the right thing and I know when I'm not.  I know what fulfills me, what charges my battery.  I know who I'm supposed to be.  There's an inner voice and a feeling of well-being that comes when things are as they should be.  I think that's God talking to me, other people may consider it their conscience or the manifestation of spirit within them.  Whatever works for you.

I know that spending time with my family and my friends feels good.  I know that helping other people feels good.  I know that riding my horse feels good.  I know this about digging in the dirt, playing with my dogs, petting my cats, working in the barn, swimming in the river, making music and writing words. Being thankful to God and trying to develop as a person who is loving and compassionate feels good and right.  But you know what, these things are authentic for me.  No conference, retreat, keynote, book or CD  is going to change these things about me.  And I don't need the approval of a life coach or a guru or anyone on the internet to know that I'm OK.  

The list of the people whose opinion I actively seek on whether I should do this or that is short.  You're probably not on it unless you're my husband, my mother, my close friend or my horse trainer.  It doesn't mean I don't love you and it doesn't mean I don't value your opinion.  I do.  It feels good to be liked, to be agreed with, to receive support and cheers and have like-minded people share with you.  But it also means that if do something or write something that you don't agree with, I won't be crushed or feel rejected or bad about myself.   It means that if some famous "authentic living" guru insists that I couldn't possibly be happy because I'm not doing things their way, I'm going to somehow feel that I must change my beliefs to suit their agenda.

Maybe you don't feel confident, maybe you don't feel like you're "ok."  Well, that's fine.  That's your own voice letting discomfort drive you into doing things differently because what you're doing now doesn't seem to be working.  When you seek new wisdom and new approaches, keep in mind that there is no program in this world that will make you or your life perfect.  Remember that everyone has a different perspective on the words "best," "ideal," "correct" and "true."  Seek answers everywhere you go.  Take what works for you.  Leave the rest.  Seek the approval of your own conscience and those who matter most.  Don't believe everything you read on the internet, in the newspapers or in the pages of a self-help book.  And remember always that we are never, ever "finished" learning or growing. 

The journey, the moment, the now, they REALLY ARE the point.

 

With or against the current

I noticed a post while idly cruising Blogher written last week by Emily Kingsley, an autism mom who blogs at Our Holland.  Blogher featured one of her posts, a reaction in writing to an encounter with a woman who doesn't believe children with autism should be mainstreamed.  At all.  Because she believes its "not fair" to the normal kids.

The post itself had my hackles up, but reading some of the comments has got me feeling indignant as well.  Of course there were a majority of commenters who expressed their outrage at such outright ignorance.  But there were a few commenters, especially one in particular from the Facebook stream, who also believe children with autism or other disabilities don't belong  in the mainstream classroom.  "They're a distraction," said one.  "Its not fair to the other kids," said another.

I simply do not accept that these parents' children have more of a right to an appropriate learning experience than my son does simply because he has autism and they don't.

I believe that my son benefits when he is in his autism classroom AND when he is in the mainstream classroom for academics.  I also believe that the time he spends in the mainstream classroom benefits his neurotypical peers.  My belief is somewhat instinctual, but it is also an informed belief based on results and research.

Someday my son will be an independent adult.  He will need to function in a world where the majority of his coworkers and peers are neurotypical.  His time in the classroom and on the playground with his mainstream peers gives him many opportunities to learn the behaviors that make his interactions with others less frustrating and more rewarding.  The time he spends learning how to interpret social cues and how to interact appropriately with other people his age enhances his ability to succeed not just now, in school, but later in life as well.  This has been our experience, but various studies over the years on inclusion programs statistically support inclusion.  Children with autism who regularly interact in a mainstream environment (with appropriate controls and support) show marked improvements in their social skills and peer-to-peer interactions.

At the same time, spending time with other children who share many of his differences provides him an environment where he fits in.  In his other classroom he is less likely to be bullied for his autism.  He has the benefit of learning under the direction and care of teachers and other professionals who know how to help him gain better control over his behaviors.  He isn't the 'weird' kid in the class, he's one of the crowd, just another kid with autism.

I don't think my son needs to "act normal."  His autism doesn't need to be "cured," it is a part of who he is, it contributes to the many qualities that make him a wonderful and unique person.  The goal of mainstreaming him is rather to help him become adept at surviving in a world where the majority of people he encounters do not share his non-neurotypical traits.  For him to have the best chance of success in the workplace, he needs to have as much time as possible learning how to read social cues, how to regulate his behavior and emotions, how to navigate change and disruption.  These are the same skills all children, normal or differently abled, need to learn in order to be successful adults, really.

I have a firm opinion that children - all people, really - benefit greatly by learning to have compassion and empathy for others.  Very often people fear what is unfamiliar, and fear and ignorance create division and hostility.  We are not so many generations removed from a society that segregated the different and the disabled to an extreme.  Fortunately many parents, educators, medical providers and opinionated and outspoken people who are differently abled have made huge strides in gaining access to education, to the workplace and to the public consciousness.

When children have the opportunity to interact regularly with other children who are differently abled, the perception of difference diminishes.  A wheelchair becomes not something strange to stare at, its just the way your friend with CP gets around.  A text-to-speech device becomes the normal way your friend with apraxia of speech talks to you.  Kids can learn early that people's behaviors are sometimes a direct result of the way their brain processes information, and that kids who have difficulty in social situations aren't just being naughty or mean, they are having a hard time managing their reactions to stimuli or unable to understand social cues.  Kids with Tourette's aren't saying things to get attention or be disruptive, their brains are sending them signals they may not be able to control.

I'm a mom.  I love my kids and I want the best for them.  I want them to be happy and healthy people who have strong, loving relationships and who do work that satisfies them emotionally.  I want them to be productive, contributing members of our society.

Segregating children with differences only serves to create adults who don't function as well in society, who are more likely to have difficulty interacting with their coworkers or the guy who sells them groceries or the lady who collects their rent.  I don't want to see my child's potential diminished to suit the attitudes of another parent who doesn't have the first clue about what it is like to walk a mile in my son's shoes.

Just as my son ought to learn how to navigate a world that doesn't function the way his brain thinks it should, so does that other parent's child need to learn to navigate a world where not all of the poeple he interacts with will be just like him. 

 

So, it wasn't ghosts

For months now we've been having problems with our electricity.  Weird problems.  The lights will flicker dramatically for a few seconds and then half the house will lose power.  It will stay off anywhere from 10 minutes to several hours, and then pop back on like nothing ever happened.

None of the circuit breakers trip when these power losses occur.  Flipping the breakers on and off does nothing to make the power come back on.  Occasionally, like yesterday, it will come on if you flip on a single light -- the light comes on and so does everything else.

But the parts of the house that go out are not all on the same side.  The TV in the corner of the living room goes and the entry way light - but not the table lamps on the other side of the room.  The hood light on the stove goes out - but not the stove.  My bedroom lights and my bathroom lights go, as does my bedroom TV and the hall light, but the kids' bathroom right next to mine and the kids' rooms all work fine. 

This is annoying enough for obvious reasons - blow-drying your hair in the morning when there is no power anywhere near your mirror is a seriously inconvenient thing to cope with.  Many a morning I've had to stand in the kitchen with my little round magnifying mirror.  Not being able to watch a show when the kids have everything else tied up - or even worse, having the bedroom DVR shut off in the middle of recording this week's episode of Game of Thrones -- that's seriously impacting my world.  But the worst, the absolute worst part of it is how it impacts the kids.

My son's classroom is designed around helping children with autism learn social and behavioral skills.  Everything is based on positive discipline.  The kids have several tools to earn prizes.  Sticker books for a toy out of the classroom toybox, a penny board for bigger rewards at the end of a day if enough pennies are earned.  Race Car Man's challenge has been to earn the letters K-I-N-D-L-E every day.  If he displays an expected behavior - complying with a request, transitioning from a task, being kind to another student, working on the task at hand -- he earns a letter.  If he earns all of the letters, that evening at home he can do his favorite thing -- play Roblox on the computer, or Skylanders on the Wii.  It started off as earning Kindle back when I first got the Fire and he wanted to play on it all the time.  Currently he is obsessed with gaming, and it is enormously motivated to earn the privilege of playing. 

Imagine a day when he has been great -- TERRIFIC in fact, and he comes home excited to continue the level he had to stop in the middle of on his Skylanders game last night because it was bedtime.  He turns on the Wii, turns on the TV, powers up the Portal of Power, and puts the chosen Skylander on it.  He starts playing, and he's having a great time.  "Mommy!" he'll call out.  "Look what I got for Gill Grunt in my upgrade!"  If I don't come running, he'll pester me until I look.  He's enjoying his reward, rightfully earned.  Suddenly and without warning, the power goes out and his game cuts off. 

This would be hard enough for a neurotypical child.  For a child with autism, it is akin to the end of the universe.  You can imagine the screaming.

If we were lucky, the power would come right back on.  If we were not, it would be out for hours and my son would be nearly inconsolable.  If he and his sister were playing the game together I 'd have two upset children howling at the same time.  You probably don't want to check my store receipts to see how much the consumption of wine and comfort food increased since this started happening.

We had some very miserable nights the last few months.

Our first assumption was that it was spikes or lags from the utility district.  We've had a lot of new construction in our area the last few years.  A 5 acre field that used to have grapevines on it was turned into a small development for about 12 big houses, and there are similar developments popping up everywhere.  After all, the additional users has had a huge impact on our internet service.  Five o'clock rolls around and the internet slows to a damn crawl anymore.  (Hel-loooooo Charter?  Upgrade your lines already!)

I called the PUD and they sent a guy the same day.  He looked at the power pole in the pasture and the transformer on the street, took some readings at the box on the house, and told me he could find nothing wrong.  He determined the problem must be in the house.

I called an electrician.  They dispatched a technician to diagnose the problem.  He couldn't really find anything but made a couple of recommendations.  When I had the money to implement, I scheduled the work.  The guy came out yesterday and did his thing.  I paid him and he went on his merry way.

I left shortly after that to pick the kids up from school and came home 15 minutes later to find half the house was dark and unresponsive.  SHIT.  I flipped a few breakers, went to my bedroom and turned the light on - and everything came back.  OK.  Hopefully this was just a fluke because someone was working on the box?  Of course not.  We went to Race Car Man's therapy appointment and came back again to a house without half its power.  My son had earned his reward in school and been very good for his therapy appointment, and he was itching to play Skylanders, so you can imagine the level of meltdown.  I called the electrician back.  He said he would come as soon as he could.  The power didn't come on for a couple of hours, but managed to resurrect itself ten minutes before he arrived.

Figures.

He still couldn't find the problem, but while he was looking, it went out again.  He tested the incoming power to the breaker panel and guess what?  We were getting almost nothing in on the left side of the panel from the lines to the house. 

After a rather terse conversation with the PUD, two very nice gentlmen arrived and worked on overtime hours to fix what turned out to be corroded and loose wires at the transformer.

Somehow I don't think they're going to reimburse me the $500 I paid to the electrician for something I didn't really need, but I'll forgive them since all I really wanted was for the screaming to stop.

No quarter

I may or may not have had a wee lil' bit of wine this evening.

This perhaps does not bode well as a prelude to a blog post, but I have it on good authority that you haven't filled your bucket list until you've written a blog post after one (mebbe two) too many glasses of cheap chardonnay.

You know, I write here about my personal life, and people are nice enough to stop by and comment here and there, and there are some folks who come by and almost never comment but stop every day or so and give my words a gander.  And that's so incredibly nice.  It feels good.  We all like to have someone pay attention to us.  Sometimes I think that blogging is my way of garnering a "hey girl" and a shoulder pat from time to time when my real-time life seems slow on handing out such badges.  And blogging keeps me from focusing my efforts on any sort of real adult writing effort, because everyone who has ever wanted to write "for real" but wasn't sure how, likely shares the same fear I carry that I'm not really as good a writer as I want to be and I lack the time/energy/resources to really focus myself on becoming as good a writer as I want to be.  This is my little outlet, this small wee blog toddling along in the margins of the world wide web.  It gives me the illusion that I'm doing something worthwhile with my words, but the reality is that it just allows me to piss away time better spent doing other things.  There are stalls to be cleaned, lawn to be mowed, dishes to be washed and floors to be scrubbed.  So instead of going to bed at 9:30 when I actually should, I go to bed at 11 so I can do the chores and still have time to see what's happening on the damn internet.

Some people who are better writers than I, and some who are both marginally worse and sometimes (I know, this is not nice) terribly worse, these people have found a way to make an actual living blogging.  They heavily pursue ad networks, they run giveaways and contests, they write more sponsored posts than original content, they bend whichever way the internet winds do bloweth, because at heart they all want to be the next Heather Armstrong or Jessica Gottlieb or Penelope Trunk.  And before there were such things as sponsored posts and giveaways and ad networks, those bloggers were out there creating the path that eventually made it possible for them and for others to make a crapload of money by putting their words up on the web. And others came along and saw the way the wind was blowing and took note.  The path to the Emerald City was glowing golden before them, and they hesitated not a moment before they embarked on their merry way to internet riches and fame (hopefully).

Hey, there's nothing wrong with having a goal, folks. 

But success inevitably breeds contempt.  And I have written before my feelings on the value of criticism and the necessity for strength in ones own beliefs and opinions as a precursor for successfuly surviving the inevitable negativity that presenting ones' life and opinions in a massively open and public forum will inevitably engender.

Just like here at home, though, no one ever listens to me.

I follow the drama and while at times it provides a respite from the actual serious drama of the minutiae of raising two very special people and trying to make sure every hungry animal on this small farm is fed  before it starts feeding on the other animals on this small farm, sometimes it just makes me want to put my face in my hands and weep.

This fall we will vote for the next President.  And while for most of us there is a clear distinction and a clear choice, I think we all know that the reality is we are choosing someone who, for us, is the lesser of evils, because our two-party system does not afford us the ability to effect real change by voting for this presidential candidate or that or by supporting this senator or that congressman.  We all must realize, deep down, that our government is a vast wasteland and our country is in terrible crisis. 

In our own cities and suburbs, in our country, around the world, there are men, women and children who are coping with violence, with hunger, with poverty.  We have more able-bodied people than we have jobs.  We have an environment in flux, whether you believe it is caused by humans or by a natural shift in the earth's weather patterns is irrelevant, because there are whole regions and millions of creatures who will be required to undergo significant change - perhaps even die out as a species - because they environment they have adapted to live in is disappearing.  It doesn't really matter WHY the problem exists, it only matters that it does exist and that it will affect us, affect our children and our childrens' children.

This world is painfully full of parents who are struggling financially, emotionally, phsyically.  Parents trying to raise a family on too little income, or parents trying to get services for kids who have needs beyond what most insurance companies and school systems can meet, parents trying hard to take an active role in their children's lives but who are struggling just to pay the bills and God knows its hard to find time to help with homework when you've worked all day and had a long commute, and then you've had to make dinner and do baths and do homework and yet you still feel like shit because you should have also gone to the PTO meeting like the rest of the parents who ARENT single or who have spouses who work locally.

And yet, the drama on this internet, it carries on.  It supplants our very real and personal dramas, it tries to distract us from the deeper thing.  We bloggers, we open our veins and bleed our lives out here for all and sundry to read.  We relate truths or we invent truths, we have terrible problems which always result higher pageviews whether that was the intent or not.  And yes, some bloggers invent drama just to create pageviews.  I look for the good in people but we all know that this happens.  And there are people who have bullshit meters or who don't buy into the fairy glitter of A list blogging, and they have the need to vent their spleens, and from time to time there is an event where the Ghostbusters accidentally cross the streams and the internet explodes.  

Don't cross the streams.

Why?

It would be bad.

Thank you, Egon.

(And thank you Ghostbusters)

We need our entertainment.  We love our celebrities and we love to hate them.  We need sports and violence and for HBO and network TV to come up with the next hottest show because Oh My God if we don't have the distraction we won't be able to cope with our scary and difficult lives.  We don't want to think about the million ways that humanity is suffering, because we can't do that 24/7 and still function in our lives.  We need the drama like we need our oxycontin and our crack.

I am not taking sides.  Or maybe I am taking both sides. I just don't get the need for the posturing.

And it all just makes me feel so jaded and cynical and tired.

I don't FUCKING CARE about your drama.  I don't care. 

You all make me so fucking exhausted sometimes.

 

 

If you've read this and you have no clue what I'm talking about, GOOD FOR YOU.  The internet has not yet had its way with your innocence and beauty and I respect you so much for being innocent and pure that I want to kiss you on your face and throw rose petals at your feet, because you're still pure and you represent what we all were before Eve ate the apple.  Don't you ever EVER change.

 

 

 

Hollwood is grossed out by Kelly Preston's boobs.

But only because they're full of milk.

Kelly Preston's name has been cropping up this week in articles with her comments about how much she loves breastfeeding her 16 month old son Benjamin.  Most of the articles have simply presented her interview statementswithout much editorializing, but leave it to the Hollywood snarkbags to react with shock and horror.

Bruna Nessif's article yesterday at E! Online suggests Preston should be added to E!s TMI Mom's Club.  Nessif writes, "Preston has been openly expressing how much she still enjoys breastfeeding her - wait for it - 16 month old son Benjamin, who shares a bed with her and hubby John Travolta."

Wait for what, exactly?  I'm not sure which Nessif, who describes herself in her Twitter profile as "surprisingly smart and witty," (really??) feels is more egregious - the fact that the Preston/Travolta family co-sleeps or that Preston's still nursing her kid.

Interestingly, a quick peruse of the comments to the article reassured me that the majority of people who are paying attention to this story fully have Preston's back when it comes to extended nursing.

More than one commenter (by which I mean something like five or six of them) referred to the W.H.O. standard, which recommends women nurse their infants for at least two years. 

The shrinking and highly vocal contingent that still finds nursing repugnant isn't going to go away anytime soon, but they're being met toe to toe consistently and (mostly) calmly by an increasingly educated public.  And for the most part, I like tenor of how people are expressing themselves about this issue.  Not always, but mostly.

The Mommy Psychologist has recently begun a series of postsabout Attachment Parenting.  Like a lot of people, TMP has an inborn resistance to being preached at.  She shares her experience of being sat down and lectured to ad nauseaum by her husband's best friend and his wife on all of the things they MUST do when their baby was born.  Let's be honest, a lot of the Dr. Sears crowd can come across as, well, overzealous. 

There has to be a middle ground between "If you don't cloth diaper, breastfeed for 6 years, feed your child only whole, organic foods, never spank, never CIO and homeschool then you're a terrible parents" and "Breastfeeding is gross, if formula/plastic diapers/spanking/Ferberizing was good enough for me then its good enough for my baby." 

Isn't there?

Personally I don't get the whole visceral reaction to breastfeeding.  Breasts were making food for babies thousands of years before some premodern dude figured out that drawing pictures of them on the cave wall gave him and his buddies a little stiffie.  And it wasn't that many generations ago that most babies in even modern society received their primary nutrition from breastmilk.   Modern technology has brought us a lot of amazing things, but it still hasn't created an equal replacement for that magic liquid mama makes.  

And nursing in public?  For crying out loud, you see more exposed flesh on an Abercrombie & Fitch billboard than you do when a nursing mama pops her little one on for a nice spot of lunch.  I remember being really offended by the people who insisted on glaring at me when I nursed my children.  Hell, its not like I was getting up and squirting them in the eye with my boob juice!

At the same time, those well-meaning but overbearing Boob Nazis need to back off on moms who feed formula.  I don't need a PhD in anything to know that the happiest and healthiest families are those that make informed and educated decisions about what works best for them.  Sometimes nursing doesn't work the way its supposed to.  Sometimes work schedules make it hard and stressful to have a successful go at breastfeeding.  And you know, sometimes formula is just what a particular parent is comfortable with.  Nobody ever learned much of anything from someone who insisted on standing there screaming at them about how wrong they are.    As I said in my comment on The Mommy Psychologist's blog, I don’t think you should have to preach to anyone about something whether it is parenting or religion. If the style of parenting you follow is so amazing and awesome then you shouldn’t have to “convert” anyone.  

About eight years ago I found a small online community of moms where I found I could fit in.  We varied in lots of ways, and not just geographically.  We have members across oceans and continents, we have made a lot of different choices about feeding, vaccinating, diapering, schooling and disciplining our kids.  To this day we are a solid community and we rally round our own when any one of us needs support.  I can't talk about the lovely box I got in the mail after I lost my brother from my moms-in-the-box without starting to tear up. 

The reason - the ONLY reason - that we have stayed together so long and that our little community works for us is that none of insists that OUR way is the ONLY way.  Every bit of advice comes with a disclaimer:  your mileage may vary.  Unless my kid is bleeding to death, these moms are the first place I go to for parenting advice.

It is really unfortunate that articles like Nessif's continue to widen the gulf and misinform people about breastfeeding and attachment parenting in general.  I have faith that the ever-growing public understanding about breastfeeding and its benefits will eventually take over until the squeamish amongst us find something else to freak out about.  I also have faith that we can, as a whole, understand that when it comes to parenting, no one "method" but the one that works for each of us and our families is the "right" one.   There's no need for such polarization amongst parents.  How we feed, sleep, clothe, educate and discipline our children is up to each of us to determine.  Sharing what worked for you is terrific; berating another family because they make different choices than you did is simply asinine.

Rant over.

Carry on.

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.