Atypical

Have you seen the Netflix series Atypical? My husband and I watched the first three episodes last night and we are both in love. We are both in admiration and appreciation anyway; I’m probably alone in declaring love at first sight. The series chronicles a family whose teenage son has autism, whose teenage daughter is both begrudgingly and lovingly, fiercely protective of him, and the relationship of the parents as they ride the whitewater rapids of life with a child whose disability makes parenting and marriage more challenging than it might otherwise be.

Elsa, played by Jennifer Jason Leigh, becomes especially troubled as her son decides he wants a girlfriend. She defines herself as “Sam’s mom,” his strongest, most intense advocate, and finds as her son is maturing, his need for her control over every variable in his life is diminishing. She is a control freak who thinks she has done all of the right things to help her son find his way in his world. Maybe she has, probably she has, but he’s reaching out in new directions, toward more sophisticated horizons. She is struggling, unsure of her very identity absent her starring role in her son’s life.

I love the character Sam, the eighteen-year-old protagonist, I adore his father, and his big sister, Casey, is simply freaking amazing! As we were watching last night, I asked my husband if he recognized shades of me in the character of Elsa (*spoiler alert* minus her dalliance with the hot, waaaaay too young bartender because obviously I’m not combing the bars seeking that type of attention). To his everlasting credit, my husband responded instantly sporting an expression of utter confusion: um, no, you’re not at all like her.

When I began blogging, my son’s diagnosis of muscular dystrophy was all I could think about. All. I. Could. Think. About. MD became my full time job; my coronation as Empress of My Son’s Diagnosis was immediate. I GET Elsa. I get who and why and how. (Though I don’t get the hot bartender fling, but I’m only a few episodes in, so I hope she does right. Five more episodes will tell that tale.)

I get how easy to define oneself, myself, as that mom could be.

But I hope I haven’t. I would hate to wake one morning to discover I occupy but one dimension.  Being an attentive mom is my full-time job, but I also want my children to see the many facets of my personhood, to grasp that their mom is the sum of her parts. I’m a mom all day, every day, sure. It’s the biggest gig I’ll ever get.  But it’s not my only duty.  I’m a goofball wife and loyal friend.  Nine months out of the year I am a baseball mom. I’m responsible for the success of many speech-language pathologists. I’ve got this knucklehead dog I am crazy about.  I like to cook, I’m a big fan of this one band I travel all over to see, I’m an avid reader.  But yeah.  I am the voice of muscular dystrophy in our household.  I sincerely hope that my children see me as more than that mom.  You’ll tell me if I begin to slink down that rabbit hole, won’t you?

Watch Atypical.  Not because I’m telling you to, but because it’s excellent, and it provides a world view with which most of you are unfamiliar.  The world is filled with perspectives; this provides a good one.

Happy New Year

In other news, it’s almost 2018.  I’m squishy sentimental over all these year-end retrospectives and the promise of the baby new year.  Receipt of a billing statement last week reminded me that I begin many a tale here, but lack follow through.  So, though I make no resolutions at the dawn of any new year, I resolve to resolve a few items here.  Clean slate and all just in time for the new year.

Go, Huskies!

Number One Son met the entrance criteria and was accepted at his top high school choice.  He’s a Husky!  Just this past Monday, after months of groundwork, seemingly endless waiting, and the anxiety of delayed notifications, he received his acceptance letter into Ronald Wilson Reagan College Preparatory High School.  I’ve not seen my son so proud of himself in well, ever. He did the entrance work, but the real work lies ahead. He’s going to work harder than he has ever known academically, and says he is up to the challenge. Proud mom.

Insurance Fail

I was royally unsuccessful in my bid to persuade Great Benefit Insurance Company to cover my son’s brain spectroscopy last summer. Despite consultation between our neurology clinic, the hospital’s billing department, and my insurance company, we ended up stuck with the entirety of the not insignificant balance. I still feel a little pukey when I think about it, but the money is gone. I’m over it.

Un-Broken

One broken collarbone, one Little League shoulder, and one rotator cuff injury later, 67% of our injured family is healing as expected. I have come to grips with the fact that I will never be made whole again. A Cortisone injection followed by months of physical therapy was tremendously helpful, but not a 100% repair for my shoulder.

I head into the new year not with resolutions, but with resolve to remain in good health. It would be extremely easy to give in, trace an easier path, and waste away in front of a television, inert. But I am better than that, and I encourage you to be better than that too. Do something fun. Do something a little dangerous. Do something just a little bit outside your comfort zone. Do something to show the ones you love you’re more than the one thing you’re best known for. Defy what defines you. Be a little atypical.

Hidden Costs

A few years ago, my friend with muscular dystrophy had to purchase a new van.  See, Adam is a psychologist, and has to get to the office to work.  But before he was a psychologist, he was a PERSON–still is, naturally–whose needs include leaving the house to you know, LIVE LIFE, so he needs wheels, as do we all. Unfortunately, muscular dystrophy doesn’t allow nimble grace in the way of ambulation, so vehicles designed for persons with disabilities tend to get the shit beat out of them.  Adam’s new van cost about $60,000.00  Yes, 60K, sixty thousand dollars, for a minivan, not a super luxe high-end Bose stereo, fine Corinthian leather (who remembers that commercial?), teak wood inserts kind of van.  No, just a Dodge Grand Caravan equipped with a ramp and transfer seat.  Holy shit.  Adam would have more equipment granted him if he were to identify himself as disabled alone and not earn income, but he doesn’t.  It’s a kind of effed up system where a disabled person person with a disability (because after all, we’re people before we’re things, except jerks probably, because being a jerk kinda leads all other designations).  Wait.  Let me begin that sentence again:  It’s a kind of effed up system where a person with a disability employed full time incurs more significant disability-related costs than a person whose disability is such that he cannot be employed, right?  Like, come on, universe, there should be something in return for working hard while maneuvering a body that doesn’t always want to cooperate, right?  Free minivan, anyone?

When I got home from work Thursday, my son was limping around the house.  I’ve made mention of this before I know, but my son does not tread lightly.  His gait is purposeful.  His efforts to step gingerly were significant, so I know whatever happened really hurt. He was putting on new pants, I mean clean pants, because he had fallen on the way home from school.  Of course, I’m all “Ouch!  Holy cow, Honey, geez what happened?” (See, I try not to overreact because I fear he’ll take my lead and freak out himself, so if I play it cool, he’s less likely to freak out too, but make no mistake, I freak the hell out) to which he replied that some other kid wasn’t looking where he was going, rammed into him, and knocked him down.

I felt immense pride in his first aid effort.  By the time I got home, he’d cleaned and bandaged the bloody wounds, quite capably I’m pleased to add.  At the crash site, he didn’t cry (so he said), but got up and walked home.  Friends, that he didn’t cry frightens me–the gashes and bruises on his knees were not insignificant.  I would have cried, and I’m a badass with pain and illness.  I was all prickly hot and then instantly ice cold seeing his knees.  Since his diagnosis, I’ve come to believe my son’s threshold of pain is jacked up.  He is bruised and battered often as he routinely trips and falls and/or bumps into things.  His proprioception isn’t great and he is a GIANT 12-year-old; he has too little awareness of his body in space.  You know when you crash and you’re like, “HOLY SHIT that’s gonna leave a mark?” He can rarely recall the source  of the contusions he gets.  This tells me he feels pain differently, or that pain is so routine, it doesn’t pay to attend to it.  *sigh*

Anyway, his pants disintegrated–holes torn through and through.  It prompted me to check his stack of sweatpants, to see if he had holes in others.  He does.  He probably hurts more routinely than I know; hopefully not so badly and visibly as this fall, but still, he falls.  When your children get past the you-give-them-their-bath stage or it’s winter time, you don’t see your kids’ bare bodies very often.  He’s so banged up.  So banged up.  And he so rarely even draws it to our attention.  His bruises are on the outside; mine for him are less visible to the eye, but they’re there.  On the upside?  My wonderful friend Rebecca volunteered to cut off the pants from knees down and convert them into shorts.  Glass half full right there.  These remarkable friends I have?  How could I not be glass half full?

My husband took big kid shopping just now because he needs shoes.  He goes through shoes quickly because he walks heavily and the soles wear more than they would for a child with a more typical gait.  He needs pants too, obviously.  And while none of this comes close to Adam’s $60,000 van investment, shoes and clothes aren’t free either.  What a weird revelation for my weekend wanderings.  Yet at the end of today’s story, I’m encouraged, not the other way around.  He took care of himself.  He didn’t ask for help.  He is stronger than I ever dreamed.  How I love that boy.  Have you seen these shirts?  Yes.

hero t shirt

You can buy yours on redbubble.com