No, you’re not crazy.

Well, maybe you are.  But since care giving puts a whuppin’ on body, heart and mind over time there’s no surprise that our lives reflect the damage.

I’m currently reading Being Mortal but Atul Gawande.  The author is a surgeon who also writes outstanding prose that invites the lay person to look at medical issues and medical professionals to look at the human impact of their work.

Yesterday, I read his description of an adult daughter caring for her father,

Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial… The burdens for today’s caregiver have actually increased from what they would have been a century ago.  Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner.  Last minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home… 

She felt her sanity slipping.

Misery (or is it madness?) loves company, and I was reminded of what I wrote in the intro to Raising A Child With Autism,

Maybe you are an amateur trying to be caregiver, therapist, clinician, advocate, mommy, daddy and everything else to a loved one living with autism. You feel like a lone idiot with a leaky hose when the job needs a landscape company.

So if you’re out there feeling depressed, or enraged, or exhausted, or or or or… just repeat after Dr. Sheldon Cooper:

sheldon not crazy

A dish best served with a smiley-face flower

The news is that agency staffing issues will delay our son with autism’s move to a group home (which seemed imminent about ten minutes ago) until mid-October.

Meanwhile, he’s descended upon us with increased nagging and bargaining for his Christmas list (yes, he starts early).  Mom and Dad are both on the ragged edge right now after bouts of illness and long work hours, so the din of his demands is a mental and emotional pummeling.

Yesterday we began to dish up a big ol’ plate of vengeance.  He came home from his day program with this very sweet guide to respectful communications:

20170824_173707THINK Before You Speak

T – is it True?

H – is it Helpful?

I – is it Important?

N – is it Necessary?

K – is it Kind?

BTW we stipulate that this is sound advice, not just for empathy-impaired people with autism but also for married couples, workplace relationships, social media, etc. etc. etc.  The world could be a much better place – Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. (Ephesians 4:29, The New Testament)

And yes, that’s a rack of his daily meds at the bottom of the picture.  I’m so tired that I gave up on the photo cropping function and I don’t much care.

So we used this against him with great delight,

Joey:  Be a good boy there will be presents?

Hateful parents:  Joey, is it NECESSARY to talk about presents today?

Joey:  When it’s winter there will be presents.

Atrocious parents:  Joey, is it HELPFUL to talk about this before the snow comes?

Joey:  When the snow comes there will be presents.

Should-be-arrested-and-executed-parents:  Joey, is it KIND to keep talking about presents?

Hey, you find respite where you can get it.  That’s care giving.  And it makes even a smiley faced flower stink some days.

 

Stop and stare

Today’s e-mail regarding a residential placement for our 23 year old son with autism:

Unfortunately, from speaking to XXXXX there will not be any pre-move meeting to discuss potential dates to move Joey into YYYYY. This is due to being short staff and not having staff in place at YYYYY to best serve Joey safely. According to XXXXX, staffing should be figured out by mid October I was told.

It was only a few weeks ago that we were given a tour of a place, told we had five days to decide, decided, and then received an offer for him to move in.

Now, the whole thing is

a177555_008.jpg

How about a little One Republic while life’s on hold?

Stop and stare
You start to wonder why you’re here not there
And you’d give anything to get what’s fair
But fair ain’t what you really need
Oh, can you see what I see

Ugggh

Received yesterday, the day before the big pre-move planning meeting for our son:

I am contacting you in regards to tomorrow’s meeting for Joey’s move. I was informed that some of the key members of tomorrow’s meeting will not be able to attend… meeting on the 25th… this would ensure attendance by everyone…

Too bummed (and tired from work as well) to blog about it last night.  Was able to churn out a lame email reply expressing our… displeasure.

The roller coaster ride continues.

Worthless and weak

I whined about Mother Nature last night, so I guess I can do the same about God the Father this morning.

Care givers have ample experience with unanswered prayer. Prayer that the diagnosis be wrong; prayer that the condition go away; prayer for resources that don’t come; prayer to “do it right” and fix everything that needs fixin’.

OK, sometimes the prayers are answered. But the great mystery is that so much of what’s good, true and beautiful comes when we are rebuffed,

Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:8-10, NLT

So up and at another day, friends. Let’s affirm the reality together, and let the power flow…

Mother Nature, Queen B_@t_h

Nah, I don’t need to spell out the word that every white kid has adopted to self-identify as something other than every white kid (Is there a mathematical formula to express that?).

Anyway, the view from our back deck last night:

So Ma Nature comes struttin’ through here like a Kardashian in front of a camera.

You know what her histrionics can do to an internet signal? The signal upon which your kid with autism (another of Queen B’s contributions) is depending for a bit of entertainment to relax for the night?

The signal which is interrupted, sending the kid into your room with anxiety rising into rage?

The signal which, when lost, can only be explained to the kid with stuff like, “The computer is broken. Uh, until tomorrow…,” the saying of which can put you on the bad end of a person with autism’s violent meltdown?

UPDATE: A friend made contact to note that her daughter with special needs had a seizure due to the systemic disruptions caused by the storm. I was so ticked off for my sake that I neglected to mention Mother Nature’s fine contribution to those in our care.

Thanks, Mother Nature.  Thanks a bunch.

Have you seen this man?

Soooooooo…

We went to a wedding over the weekend.  All three of us – our son with autism included.

There was much in our favor.  The couple came from an extended family of friends that our son, Joey,  knows and enjoys.  The atmosphere was happy earthy rather than formal and uptight.  The weather featured a few of the rationed really-nice-days allocated to South Dakota every year.  And there was food to be downed.

As I shared earlier, the rehearsal went really well for our whole family.  And we were going back to the same place with the same folks for the wedding and reception.

Something changed.

Maybe it was the volume of the music in the reception hall.  Maybe it was the bigger crowd of people.  Whatever it was, it brought out Joey’s “best.”

5118Here’s a surveillance photo of the suspect.  Notice that the look isn’t very happy.  That little bucket was full of chex mix for snacking – he pulled it to himself, spilling some and playing tug-o-war with us as we tried to retrieve it.  Calm words about “sharing” failed.  Then he ate all the chex out of the mix and left us with just the pretzel bits.

What you might not be able to tell from this pic is that he’s not in a chair.  He’s on his knees on the floor.  We tried to coax him into a chair but that agitated him.

Then he scooted on his knees out into the middle aisle of the reception hall – just as the wedding party was set to make its entrance.

Joey’s figured out that he’s big enough to physically resist mom, so I had to hunker down on the floor and drag him just enough to clear the aisle until the wedding party made it through.

Then he stood up and started walking around in front of the head table, which of course was when people wanted to be taking pictures of the couple and their gorgeous bridesmaids and groomsmen.

I managed to stay just calm enough to convince Joey that he didn’t have to sit if he went and stood by the windows along the wall.

The long and short of it is that Melissa and I enjoyed our friends’ wedding very much, we all had a nice dinner and drinks (several drinks in reaction to Joey) and then came home and collapsed.

Care giving is a game of home court advantage – you usually wind up losing on the road.

My picture of defiant Joey – actually the whole vibe of trying to handle him – reminded me of this recent movie scene:

 

 

Only human

Just caught a short, brutally honest article from the perspective of caring for a person with dementia or Alzheimer’s.

In Caregivers Are Only Human, Rick Phelps writes,

frayed rope

Image from the linked article.

Everyone loses their temper once in a while. People say things to each other that they don’t mean under far less stressful situations. Caregivers are under an incredible amount of pressure, and they are not immune to letting their emotions get the best of them. Dementia adds yet another challenge to the mix.

There are several comments at the article that are worth reading as well.

In Raising a Child With Autism, I describe an ice storm that clobbered our town a few years ago.  The aftermath of that mess serves as an image for caregiver breakdown,

Sometimes physically, but more often emotionally, caregivers sag like ice-burdened trees. We wonder if our groaning means we’re bending with the effort or if it’s the prelude to falling down.

All relationships – not just care giving situations – can take us to our limits and show us at our worst.  As author Anne Kennedy reminds us with a recurring chapter heading in her book for “angry or worn out people,” You Still Can’t Do It.

Which is why care giving or just plain ol’ family life can be the door to discovering the unearned, undeserved favor of a loving and very patient God.

NO, IT’S NOT BAD PARENTING

Award winning author Norma Gail asked me some probing questions in an interview shared on her blog.

Here’s a bit of it, with some key quotes available for Tweets embedded by the host,

NORMA GAIL:  Autism affects 1-68 children in America. That’s more common than most people probably realize. What are the most basic things you wish people knew about Autism and the families it affects?

Leonidas

Lifted here.  You might find the article amusing, too.

SOMETIMES CARE GIVING STINKS: I think I speak for many families of children with autism who want to scream, “NO, IT’S NOT DUE TO BAD PARENTING.”  It’s a neurological disorder, most likely genetic rather than environmental in origin (although people debate that with some ferocity).  One of the hardest things is that kids with autism are impaired socially and so their parents can invest sacrificial work with little to no emotional connection in response.  We were spared that – Joey is very connected emotionally, albeit in some quirky ways.

There is no “cure” for autism or any one therapy that is useful in all cases.  Families hope for a “silver bullet” that will solve things, and this can leave us open to bad advice, blaming or other traps.

Parents deal with feelings similar to grieving a death.  Various hopes and dreams we hold out for a typical child often have to be given up for a child with autism.  Some kids on the autism spectrum grow up to play sports, perform in the arts, excel in academics or vocational skill, get married and all kinds of other things we think of as making for a “good life.”  But many will never experience some or all of those things.  They have other pleasures – parents have to learn to love those.

Siblings can feel ignored due to all the effort and attention put into caring for the child with autism.  The whole family is impacted.

Allies mean a great deal.  Educators, medical people, community programs, understanding churches (not always easy to find), and just plain caring folks make life better.  There’s a neighbor of ours who routinely keeps going down our sidewalk when clearing his of snow – the time and effort he saves us is a precious gift.

NG: What are some of the greatest challenges faced by parenting a child with a disability?

SCGS: As the book points out, family caregivers – and this applies in situations beyond Autism, such as Alzheimer’s, spousal disability and many other conditions – are trying to fulfill roles beyond the knowledge, skill, energy, patience and finances of a typical individual or family.  We get stretched beyond our limits and, really, beyond any realistic expectation of becoming “good at it.”

In our case, we had to deal with Joey’s “meltdowns.” Kids with autism become frustrated when they can’t understand or be understood by others, and this can lead to a violent outburst.  It’s not the same as a tantrum, in which a kid wants a toy.  It is an all consuming surge of energy in an effort to connect with a world that seems out of touch.  It is heartbreaking to try and contain a beloved child who is putting you in serious danger – Joey would punch, kick, bite and throw objects at us.

There were several years where we didn’t think that Joey or any of us would ever sleep.  The stuff that makes you laugh after the years of raising a baby keeps going when autism is in play.  I sometimes tell people, “Imagine having a combination of newborn and toddler for a couple of decades.”

Parents share war stories of dealing with “the system.”  Some school districts are downright hostile to special needs kids, considering them a financial drain on services for “normal” kids.  Then there are the insurance issues, efforts to see specialists, quests for specialized therapies – it is exhausting and sometimes fruitless.

+++

Check out the interview.  Leave a comment there on Norma Gail’s blog and you might win a signed copy of Raising a Child With Autism.

Empty cart, not yet empty nest

shopping-cartI couldn’t resist having fun with the sign on this shopping cart.  I Instagramed (is that the verb?) it, with a caption about how I wasn’t getting any children anyway since I was fasting for Ash Wednesday.

Humor is an important ally to the caregiver.  It is a tension cutter.  Much of our humor is dark, but then so are the situations that generate it.

In recent months it’s been harder for Melissa and me to laugh at some of the quirks of Joey’s autism.  His video watching becomes intrusive noise; I don’t think he’s turned up the volume but our annoyed ears seem to think he has.

The chores of his daily routines – chores we do for him, let me be clear, not chores he does – are not a terrible effort yet they are numbing.  Not demanding physically, but draining psychically.

His non-cooperative behaviors get under our skin more.

We have more wistful conversations about being empty nest, about having the house and the time to ourselves for the first time in forever.  And so we wait for Joey’s group home placement, still loving him and wanting all to be well in his life yet feeling the limits of our own aging and of the two decades dominated by autism.

And that’s followed by a mist of fear that we’ll be staring at each other across a great emptiness wondering, OK, now what do we do?

Speaking of aging, I guess that entitles me to repeat stuff I’ve probably said before but can’t remember if I did.  So, let me say (again) that one way to describe raising a child with autism is to ask parents of typical kids to remember the sleepless nights and all the stuff that went with a new baby – the stuff that in hindsight becomes a source of humorous memories.  Now imagine that much of that stuff never developed into self sufficient adulthood and you kept doing it for five years, then ten, then twenty.  Not so funny anymore.

Remember that you are dust, and to dust you shall return, is what we say on Ash Wednesday.  Indeed, care giving exposes every pathetic evidence of sin and fatal separation from God – every bit of selfishness, the limits of love, the capacity for self pity and resentment, the instinct to blame… all of the ungodly feelings, thoughts and emotions in service of the world, the flesh and the devil.

If we are fortunate, it becomes the great weakness that throws us upon the grace of a loving God, who gives us power to live in ways we never imagined,

Three times I appealed to the Lord about this, that it would leave me, but he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong. (2 Corinthians 12:8-10)