Bye Schneider

Good help is hard to find, right, caregivers?

SchneiderOne of the blessings of our move to Sioux Falls was connecting with Dr. Scott Schneider as our son’s pediatric psychiatrist.

When we moved here over a decade ago, we were overwhelmed with behaviors from Joey’s autism.  The worst were sleepless, hyperactive nights and violent outbursts.

Dr. Schneider’s calm and compassionate care soothed Melissa and me as well as addressing Joey’s challenges.  Although as leery as any parents about using meds to control behaviors, we found Dr. Schneider to be conservative with prescriptions, testing constantly for side effects, reducing or even eliminating meds whenever possible, and letting us know about the latest insights into the pluses and minuses of the various pills he prescribed.

It was Dr. Schneider’s care that significantly reined in Joey’s aggression and allowed him (and us) to get some regular sleep.

Dr. Schneider was the secret saint we mentioned here four years ago, who admitted Joey to a behavioral unit for a few hours when I was working nights and Melissa was about to be on the end of a beat down.

As Joey aged, Dr. Schneider tapered off several meds on the assumption that some settling of brain chemistry would bring Joey closer to typical behavior and eliminate the need for drugs with long term side effects.

The doctor was right.  But along with Joey’s behavioral maturity comes the sad reality that he’s outgrown oversight by this wonderful pediatric psychiatrist.  On the plus side, another doctor in the same psychiatric group is taking over, so our confidence is high.

But we’ll miss the kindness extended to us on visits to Dr. Schneider, his nurse Lori and other staff who showed compassion for the caregivers as well as the patient.

Trying to help Joey with social skills, we coached him to say “Hi, Doctor” when Dr. Schneider entered the room.  But we could never get Joey to change his preferred form of farewell, “Bye Schneider.”

So we say “Bye Schneider” with a touch of sadness but with great gratitude for a care giving ally who made a great difference for our son and for our whole family.



Because the world needs another hashtag.

Blooming Idiots is the title of our little book of stories, insights and encouragement for caregivers.  It is due for release this August from Lighthouse Publishing of the Carolinas.  If you’re in or around the upper Midwest, we’ll be exhibiting at the South Dakota Festival of Books on September 24th.

While our experience is caring for a son with autism, we’ve had some positive feedback from folks in a number of care giving situations who’ve read the draft.  Even a parent of a neurotypical (fancy word for “normal”) teenager found it helpful.

We hope you’ll find it helpful, too.  More details as the release draws near.

Meanwhile, we’ll keep sharing some tales and reflections here at the blog, as well as short takes via our Facebook page and Twitter.  Stuff like this…

A garden requires patient labor and attention. Plants do not grow merely to satisfy ambitions or to fulfill good intentions. They thrive because someone expended effort on them. Liberty Hyde Bailey

… that reminds us of hard working caregivers like you.  And us, sometimes.

Call the police…

…and say Thank You during National Police Week.

It is important that caregivers build a relationship with law enforcement, who are the first responders when those in our care wander or come into other situations that can be delicate at best and dangerous at worst.

We are fortunate to be in a city where the police offer a special needs database.  They have our son’s picture and information on how to engage and comfort him readily available to patrol units.

Our local police have come to our help on several occasions, so we take this opportunity to express our gratitude.

The Unbearable Heaviness of Being

True confession: I’ve not read the book or even seen the film from which I’m stealing the title of this post.  It’s not quite 0700 and I’m already beyond caring about perfect analogies and such.

What I’m in touch with this morning is that I’m less undone by the big messes of care giving than by the repetition of routine chores, no one of which is heavy.

The occasional emergencies call forth some effort and then go away.  A few weeks ago at work a customer’s kid threw up all over an aisle.  The young guys I work with ran every which way to find mops, don hazmat suits and notify the Pentagon.  By the time they got back to the floor, I’d already grabbed a few rags and paper towels and had the mess cleaned up.  No big.  Care giving accustoms one to such situations.

But this morning in my own home I’m struggling.  Not a single difficult or out-of-the-ordinary task presented itself over the last couple of pre-dawn to sunrise hours.  But for whatever reason, this is one of those days when the normal stuff seems like a load and now I’m tired, surly and anxious (great time to write for you, dear reader!).

Our cat’s meowing for her breakfast revved my heart rate like the time a mountain lion’s noise chased me out of a tent in the Black Hills.

Our dog’s happy dance in anticipation of running outside to pee (and chase rabbits and run across the street and bark at joggers etc.) felt like I was being run over by a wildebeest stampede.

IMG_20130704_101412_454The kid was messy in the bathroom, which isn’t new but today raced my pulse like a tire blowout on the freeway.  Then he didn’t want to sit at the table and have his morning medications.  He gave me his patented “I’m tuning you out so you don’t exist” resistance.

“All of this” – a cat’s meow, a dog’s potty break, a kid’s morning routines – comes to maybe 15 or 20 minutes.  Not much time, not physically demanding work, not unexpected.

That’s the b***h of it.  It’s not unexpected.  Day in, day out, for weeks and months and years.  I get the mornings, and Melissa meets him coming off his bus at the end of the day.  Her pile of stuff includes trying to engage him in conversation only to have him fry her brain and last nerve with repetition of his demand for whatever new video has him perseverating (had to throw in a bit of catchy special needs jargon to keep up the blog’s standards, dontcha know). He can repeat a phrase for hours, sometimes tugging on her ear to make sure she can’t tune it out.  And just when mom is near her wits’ end, the dog starts gnawing on its paws with a gross slurping sound that makes sure wits’ end is reached and surpassed.

20160519_064515So here I sit in a lump to wait for his a.m. bus.  Coffee.  I love coffee.  No, I lust for it and obsess over it.  But I can’t get up to make it.  It feels like the one-more-chore I can’t handle this morning.

Maybe I’ll lose internet connection.  That would be awesome.

It ends in a vowel and has a show tune

I mean, all of the medications in the commercials end in a vowel, have a fast talking voice over telling you all of the awful and maybe even fatal side effects, and happy images of people re-perkied (is that a word?) by the drug.

You might have watched THIS ONE.

It ends in a vowel, can impair your breathing and make you die, and it causes people to sing show tunes – what’s perkier than that?

Well dang it, I want MY vowel-ending, catastrophic side effect bringin’, make-me-wanna sing and dance pill, too.

Heart failure? Come on, what about the chronic condition suffered by caregivers – just plain ol’ failure failure? Why does it have to be a bodily function or organ that fails in order to get a magic pill?

Why can’t our abiding sense that we aren’t doing enough or doing it right merit some medication?

I brought this up on Facebook and friends were good enough to provide some musical therapy, both old school…

and somewhat less old school…

And where are our claw foot tubs while I’m at it?  Oh, wait, that one doesn’t end in a vowel.

Come on, pharmaceutics people, we’re waiting out here.

Rock ‘n’ Roll ‘n’ flowers and stuff

A care giving friend hospitalizing her son for the umpteen thousandth time shared this on Facebook,

Well, I guess we stay til a bed is confirmed. D– just goes with the flow, which personally, rocks.

Caregivers don’t always get “normal” love and comfort from those in our care.  But there are precious times when they make life better just by who they are.  Our friend is up to her eyeballs in anxiety about her son’s serious medical stuff, and he just rolls with it.  In a way, he gives her some care without even trying.

Mom and JoeyYears ago, Melissa observed how our son with autism isn’t going to bring us some of life’s typical heartaches and breaks.  He won’t fret over the overload of bad headline news.  He won’t ride the roller coaster in and out and in and out and in and out of love, lust, or whatever.  At 22, he still finds calm just sitting next to one of us when he’s out of sorts about something in his world.

People with autism and some other special needs roll with a lot of the stuff that sends most of us over the edge.  And that, as our friend said, rocks.

I know that we are supposed to consider the lilies when we’re wound up.  Maybe those in our care are the flowers that can help blooming idiots like us get the right perspective,

Consider the lilies of the field, how they grow: they neither toil nor spin… Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. (Matthew 6:28, 34 ESV)

Where’s OUR Hallmark day?

Props to NPR’s Michel Martin for suggesting a Caregiver’s Day along the lines of Mother’s Day.

But can I just tell you? There’s a new day coming. Just as President John F. Kennedy famously said we are all Berliners, we are all about to become mom.

Why do I say that? I say it because our country is getting older. The number of Americans aged 65 and older is projected to more than double by the year 2060, according to the Population Reference Bureau. Those aged 65 will be nearly a quarter of the population by then, compared to 15 percent now.

The gender gap in life expectancy is narrowing, meaning more men are surviving longer. But that doesn’t mean that long-lived couples necessarily can look to each other for care, because more older adults are divorced or living alone for other reasons. And additionally, more people are expected to live out their days with Alzheimer’s disease.

That means someone will have to care for all these people. And that someone is all of us. Perhaps that is the point at which the judgement may cease and the problem solving may actually begin.

I say that because when it comes to children, it is perhaps unkind but common for people to default to the position that if you can’t take care of them by yourself, with little help from anybody else, then you shouldn’t have them. That logic doesn’t work with elderly, frail, and possibly sick parents.

What is the critique then? That your parents didn’t earn enough or save enough or have more kids to take care of them? That might be true, but how about another possibility: That we might finally begin to come to grips with this country’s care giving crisis.

Caregiving is the rare profession that is both essential to everyone, at some point, but also low-paid and poorly trained and still wildly unaffordable to most people who need it. Something has got to give.

Shall we celebrate Caregiver’s Day, then? Not catchy, I know. But get the cards and flowers ready. That’s where we’re headed.

Wasn’t gonna do Mother’s Day but…

Mom mug

Story of This Life on Facebook

…then I laughed at this.

It’s evocative of the simplification of goals and rewards that is necessary to caregiver survival.

But after I got a laugh at that, I shed a tear over this article from a Church of England news source,

CHILDREN in care are being denied the mental-health treatment they need as they are shuttled between foster homes, (Members of Parliament) have warned.

Almost half of the children and young people in care have a diagnosable mental-health disorder, compared with about one in ten children who are not in care, a report from the House of Commons Education Select Committee says.

But, despite their needs, MPs found that vulnerable children are being turned away by mental-health services because they do not have a stable home, or they do not meet the high thresholds set to qualify for treatment.

Let me paraphrase:  A nation decides that public spending on other stuff can be maintained by dumping medical and clinical therapeutic level responsibilities on everyday people.

That goes to the heart of the family care giving dilemma, be it birth family, foster care, adoptive parents or whatever household type responds to the need.

So a salute to all the caregiving moms out there, while you carry on as doctors, nurses, therapists, teachers, pharmacists, and all of the other roles you receive, minus the public affirmation, titles, training and affirmation, of course.

Not to discount care giving dads (I am one, after all).  And nobody tells me I’m pretty, so I get it.

But it’s Mother’s Day, so let’s salute the ladies who don’t get to take Sunday off, probably won’t get a restaurant outing and might, at best, get that pajama day as a bit of respite.  Going into labor was just the start of labor that goes on and on and on.

But yes, the kids are alive.

Thank you.