Family, Marriage, Meditation

Every day, choose joy…some days it works

ImageOn any given day, I am a chef, a maid, a chauffeur, a doctor, an engineer and very often a UN peacekeeping force, and that can be before breakfast.  I am exhausted and empowered by the number of problems I solve every day.  Having three kids, one with special needs can mean that I have to remember both the pythagorean theorem to help B with his homework and try and figure out why M is banging her head…..concurrently.

I really believe that we have the power to shape how we feel about things.  There are certain facts of my life.  I have a child with really significant special needs, I have a curve in my spine that were it straight, I would be two inches taller, which would make me skinny.  I curse a lot.  Sugar is the one wagon I can’t stay on. Despite my best efforts, I still want to be cool.  My hair is getting gray really fast. I was not grossed out yesterday when I said to one of my children “please don’t pick your nose at the table and eat it.”  I am who I am, I admire women who are elegant and glamorous.  Instead I am the kind of woman who often accidentally spits while speaking.

One thing that has always been true about me is that I am an optimist.  In the days and weeks after my daughter was diagnosed with autism I found myself profoundly sad, it rested in my bones.  I worried that I would never feel like myself again, I missed myself.  I was serious all the time.  I went to bed reading medical textbooks, and spent my days in doctors’ offices.  I longed for fart jokes, or for some sense of lightheartedness to return to our lives.  I thought it never would.

I was wrong, it did.  One morning, I woke up and felt a little bit like my old self, and gradually the rest of me came pouring back.  I now know that while an obstacle itself may not be a choice, my response to it can be.  I never expected to have a child with whom I couldn’t speak, but I cannot let it break my heart.  I wake up and know that I will be faced with lots of opportunities for perspective.  Sometimes I succeed and make a difficult moment into an easy one by taking a couple of deep breaths and just moving forward.  Other times I unleash a string of profanity and feel sorry for myself.  Each moment is a chance to be honest about who I am and show up for the people who need me.  Life does not always lend itself to joy.  Joy is a choice and we can make it every day, and on the days we don’t, we can forgive ourselves and move on.

Family

I am 1 in 34

katherinemae1 in 5 Americans has a tattoo
1 in 6 has light eyes
1 in 13 has food allergies
1 in 30 has red hair and freckles
1 in 50 has an artificial limb
1 in 68 has Autism

My daughter is 1 in 68. The CDC recently released numbers saying that 1 in 68 children are Autistic. Each one of those children has two parents who also carry that diagnosis with them, always. Does that make me 1 in 34? I think it does.

In every house, in every child, in every family, Autism looks different. But if you are a parent of a child on the spectrum, no matter where they fall, there is some common ground. I know you when I see you; we walk the same path lined with eggshells, and potholes, but it’s ours.

Below is a list that anyone in the 1 in 34 club will recognize. You are probably a member of the club if at least a few of the below ring true:

  • If you have ever wondered whether your child will have a friend.

  • If your child has never told you about their day.

  • If you know what “stimming” means.

  • If you know what two or more of these stand for: IEP, PPT, SPD, OT, SLP, ABA, BCBA, EEG, GF, CF.

  • If you know what “scripting” means.

  • If you wake up at least once a week and wonder who will take care of your child after you die.

  • If you have ever spent an entire meeting talking about eye contact.

  • If you look at a package of diapers and wonder what happens after your kid gets to 50 lbs.

  • If you know what “fecal smearing” is.

  • If your first thought when invited to a family gathering or neighborhood barbeque is how you can graciously decline.

  • If an advertisement for a parade or fair, makes you think, “that sounds loud.”

  • If going to a restaurant or a movie as a family isn’t something you do for fun, ever.

  • If when you enter a room, your first thought is, “what will my child climb on in here?”

  • If the question “how old is she?” makes you uncomfortable.

  • If you count your money in hours of therapy instead of years of retirement.

  • If the sight of a 16 year old flapping his hands and bouncing on line at the grocery store makes you smile and cry at the same time.

  • If you know that milestones have nothing to do with age.

  • If you know that there is nothing better than an ordinary day.

  • If anyone has ever said to you “I don’t know how you do it…”

  • If you never wonder what you are made of.

If you know how any of the above feel than you are a member of the 1 in 34 club. It seems to get less exclusive every year. There is no secret handshake, or tennis whites. No one wants to join this club, and once in, you are a member for life.

I look at my daughter and she has taught me so much — a whole new language, even though she doesn’t speak.  She is fierce, and bright, and beautiful.  She is unconcerned about social pressure and will never wonder if her outfit makes her look fat. She is completely clear about what she likes, and is uncompromising in her pursuit of it.

On her behalf, I have become someone I never thought I would be.  I am difficult. I ask too many questions.  I disagree with people even when they are doctors. I have cried in public. And most importantly, I have learned that you don’t love someone for who you thought they would be, or for what their future may hold.  You love them because they are yours, because even if they are 1 in 68, to you they are 1 of 1 and you cannot imagine your life without them.

Meditation

Do this today, your life is waiting…

buddha peteIf you knew there was something that would make you a better partner, parent, friend, and human, wouldn’t you do it every day? The greatest gift we can give anyone is our complete attention. This is true of ourselves as well. The most effective way of practicing paying attention, is meditation.

  • Find yourself a place to sit, it can be the floor or a chair.
  • Sit up straight enough that you can feel your breath move in your body, but not so straight that it feels punitive.
  • Let your hands rest palms down on your knees.
  • Keep your eyes open and on the floor about 6-8 feet in front of you.
  • Find the rhythm of your breath and let your attention rest there. You will still be aware of sounds and sensations around you, but don’t let the siren outside or the smell of french fries from a nearby restaurant become fascinating distractions, just notice them.

When your mind wanders (and it will….a lot) label that “thinking” and return to your breath.  You may find yourself saying “thinking” every two seconds, that is normal.

Chogyam Trungpa called that constant internal monologue “subconscious gossip”.  Just as regular gossip serves almost no purpose, our internal monologue is usually just a deluge of material rarely related to where we are and what we are doing.  When we stop and actually watch our own minds we realize how busy and crowded they are. By taking time to stop, to sit, to practice being awake to who we are and the nature of our minds, we learn to pay attention.

Eyes open is something that many students struggle with, it gets easier over time.  The gaze is soft, you blink normally, you are not trying to bore holes through the floor. We practice with our eyes open because, as my teacher David Nichtern says, we are not interested in becoming the worlds best mediators, we are interested in becoming better humans.

Try it for 10 minutes every day, start with a week, set a timer, and sit. If you can sit longer, sit longer, stick with it, it’s hard.  Eventually, something will shift. You will notice, when a friend is talking to you, that you are not really paying attention, and you will be able to change that. You will notice, that you are eating something delicious, but thinking about how you have to go to the bank, and you will be able to change that.  You will notice, you are experiencing your life differently, and so will the people around you.

Start today. This is your life, this is what you are working with, this is it.